1 00:00:11,440 --> 00:00:13,640 Welcome to the Clinical Center Grand Rounds, 2 00:00:13,640 --> 00:00:17,440 a weekly series of educational lectures for physicians and 3 00:00:17,440 --> 00:00:20,080 health care professionals broadcast from the Clinical 4 00:00:20,080 --> 00:00:23,040 Center at the National Institutes of Health in 5 00:00:23,040 --> 00:00:24,840 Bethesda, MD. 6 00:00:24,840 --> 00:00:28,400 The NIH Clinical Center is the world's largest hospital totally 7 00:00:28,400 --> 00:00:32,080 dedicated to investigational research and leads the global 8 00:00:32,080 --> 00:00:35,040 effort in training today's investigators and discovering 9 00:00:35,040 --> 00:00:37,200 tomorrow's cures. 10 00:00:37,200 --> 00:00:46,320 Learn more by visiting us online at http://clinicalcenter.nih.gov 11 00:00:46,320 --> 00:00:52,720 OUR 5 PRESENTERS TODAY ARE: 12 00:00:52,720 --> 00:00:53,880 DR. PRECILLA D'SOUZA, SHE 13 00:00:53,880 --> 00:00:55,320 RECEIVED HER BACHELOR'S AND 14 00:00:55,320 --> 00:00:57,280 MASTERS DEGREES IN NURSING AND 15 00:00:57,280 --> 00:00:59,760 PEDIATRICS FROM THE COLLEGE OF 16 00:00:59,760 --> 00:01:02,000 NURSING IN INDIA KNOW. 17 00:01:02,000 --> 00:01:05,520 SHE COMPLEAD HER PEDIATRIC NURSE 18 00:01:05,520 --> 00:01:06,560 PRACTITIONER TRAINING AND 19 00:01:06,560 --> 00:01:07,560 DOCTORATE IN NURSING PRACTICE 20 00:01:07,560 --> 00:01:10,800 FROM THE UNIVERSITY OF MARYLAND 21 00:01:10,800 --> 00:01:13,240 SCHOOL OF NURSING SHE HONED HER 22 00:01:13,240 --> 00:01:15,480 PEDIATRIC SKILLS IN PRIMARY 23 00:01:15,480 --> 00:01:17,480 CARE, PEDIATRIC SURGERY,NYONATAL 24 00:01:17,480 --> 00:01:19,000 INTENSIVE CARE, HOSPITALS 25 00:01:19,000 --> 00:01:21,920 THROUGHOUT MARYLAND. 26 00:01:21,920 --> 00:01:26,600 IN 2010 DR. D'SOUZA JOINED THE 27 00:01:26,600 --> 00:01:28,000 NIH AND IN 2016 HE WAS RECRUITED 28 00:01:28,000 --> 00:01:30,640 TO THE NATIONAL GENOME HUMAN 29 00:01:30,640 --> 00:01:34,360 RESEARCH INSTITUTE NIH 30 00:01:34,360 --> 00:01:36,640 UNDIAGNOSED DISEASES PROGRAM. 31 00:01:36,640 --> 00:01:43,760 IN 2019 DR. CYNTHIA TIFT AND HER 32 00:01:43,760 --> 00:01:48,000 COLLABORATORS AND HER 33 00:01:48,000 --> 00:01:49,800 COLLABORATORS IN GENE THERAPY 34 00:01:49,800 --> 00:01:53,520 FOR CHILDREN WITH GM1 INCASLIO 35 00:01:53,520 --> 00:01:55,640 SIDOSEIS, A UNIFORMLY FATAL 36 00:01:55,640 --> 00:02:02,600 LYSOSOMAL STORAGE DISORDER WITH 37 00:02:02,600 --> 00:02:04,520 NO APPROVED TREATMENT. 38 00:02:04,520 --> 00:02:12,360 MISS KRISTA CATO IS EXPERIENCE 39 00:02:12,360 --> 00:02:14,000 IN CRITICAL AND CRITICAL 40 00:02:14,000 --> 00:02:14,640 NURSING. 41 00:02:14,640 --> 00:02:17,600 OVER THE LAST 6 YEARS SHE SERVED 42 00:02:17,600 --> 00:02:19,400 AS SUPERVISORY MANAGER WITHIN 43 00:02:19,400 --> 00:02:20,960 THE NURSING DEPARTMENT WHERE SHE 44 00:02:20,960 --> 00:02:23,040 DIRECTED OPERATIONS TO PRODUCE 45 00:02:23,040 --> 00:02:24,200 HIGH RELIABILITY SYSTEMS. 46 00:02:24,200 --> 00:02:26,400 SHE RECENTLY TRANSITIONED TO THE 47 00:02:26,400 --> 00:02:28,640 NATIONAL INSTITUTE OF ALLERGY 48 00:02:28,640 --> 00:02:30,280 AND INFECTIOUS DISEASE AND NOW 49 00:02:30,280 --> 00:02:32,200 SERVE AS AS A NURSE CONSULTANT 50 00:02:32,200 --> 00:02:34,200 WITHIN THE DIVISION OF 51 00:02:34,200 --> 00:02:39,600 MICROBIOLOGY AND INFECTIOUS 52 00:02:39,600 --> 00:02:41,080 DISEASES. 53 00:02:41,080 --> 00:02:42,960 DR. ROSA ROUSSEAU IS A 54 00:02:42,960 --> 00:02:44,600 BEHAVIORAL NURSE AT THE CLINICAL 55 00:02:44,600 --> 00:02:47,680 CENTER FOR OVER 25 YEARS OF 56 00:02:47,680 --> 00:02:49,200 PEDIATRIC NEONATAL HIGH RISK 57 00:02:49,200 --> 00:02:54,600 MATERNITY AND FLIGHT NURSING 58 00:02:54,600 --> 00:02:54,880 EXPERIENCE. 59 00:02:54,880 --> 00:02:57,040 DR. ROUSSEAU HOLDS A DOCTORATE 60 00:02:57,040 --> 00:02:59,600 IN NURSING PRACTICE AND MASTERS 61 00:02:59,600 --> 00:03:01,200 IN NURSING EDUCATION, SHE'S 62 00:03:01,200 --> 00:03:02,560 EXPERIENCED IN HEALTHCARE 63 00:03:02,560 --> 00:03:04,280 SIMULATION BEST PRACTICES AND 64 00:03:04,280 --> 00:03:06,320 HOLDS CERTIFICATIONS AS A HELGTD 65 00:03:06,320 --> 00:03:09,280 CARE SIMULATION EDUCATOR, HIGH 66 00:03:09,280 --> 00:03:11,760 RISKNYONATAL HUSBANDERRING AND 67 00:03:11,760 --> 00:03:13,240 IN PEDIATRICNYONATAL TRANSPORT. 68 00:03:13,240 --> 00:03:14,640 SHARING HER PASSION FOR 69 00:03:14,640 --> 00:03:17,960 ADVANCING THE SCIENCE OF 70 00:03:17,960 --> 00:03:20,000 HEALTHCARE SIMULATION, C 71 00:03:20,000 --> 00:03:21,400 ROUSSEAU HAS PRESENTED AT 72 00:03:21,400 --> 00:03:22,080 NATIONAL AND INTERNATIONAL 73 00:03:22,080 --> 00:03:25,560 CONFERENCES IN A VARIETY OF 74 00:03:25,560 --> 00:03:26,360 SIMULATION TOPICS TO ENHANCE 75 00:03:26,360 --> 00:03:31,320 PATIENT SAFETY AND QUALITY OF 76 00:03:31,320 --> 00:03:31,640 CARE. 77 00:03:31,640 --> 00:03:34,200 DR. PATRICIA TODD IS THE 78 00:03:34,200 --> 00:03:35,560 CLINICAL PEDIATRIC SPECIALIST 79 00:03:35,560 --> 00:03:37,560 FOR CRITICAL CARE AND SEDATION 80 00:03:37,560 --> 00:03:40,320 SERVICES AT THE CLINICAL 81 00:03:40,320 --> 00:03:41,800 TRUSTEES SINCE 2017. 82 00:03:41,800 --> 00:03:44,200 DR. TODD'S PEDIATRIC EXPERIENCE 83 00:03:44,200 --> 00:03:44,800 CROSSES IN-PATIENT AND 84 00:03:44,800 --> 00:03:46,960 OUTPATIENT CARE AND HAS 85 00:03:46,960 --> 00:03:49,000 PRACTICED IN NEONATAL INTENSIVE 86 00:03:49,000 --> 00:03:52,680 CARE, PEDIATRIC CRITICAL CARE, 87 00:03:52,680 --> 00:03:54,800 PEDIATRIC EMERGENCY, NURSING 88 00:03:54,800 --> 00:03:55,960 MANAGEMENT, NURSING EDUCATION, 89 00:03:55,960 --> 00:03:57,800 AND ADVANCED PROJECTIS NURSING 90 00:03:57,800 --> 00:04:04,600 AS A CLINICAL NURSE SPECIALIST. 91 00:04:04,600 --> 00:04:06,920 DR. MYRA WOOLERY IS A CLINICAL 92 00:04:06,920 --> 00:04:09,800 SPECIALIST FOR PEDIATRICS AT THE 93 00:04:09,800 --> 00:04:10,360 NIH CLINICAL CENTER. 94 00:04:10,360 --> 00:04:12,320 SHE HAS BEEN COVERING THE 95 00:04:12,320 --> 00:04:13,520 PEDIATRIC PROGRAM OF CARE WHICH 96 00:04:13,520 --> 00:04:15,600 SEES A VARIETY OF MEDICAL 97 00:04:15,600 --> 00:04:19,880 CONDITIONS SUCH AS ENDOCRINE, 98 00:04:19,880 --> 00:04:21,000 GENETICS, HEMATOLOGY, ONCOLOGY, 99 00:04:21,000 --> 00:04:23,000 IMMUNE DEFICIENCIES AND RARE 100 00:04:23,000 --> 00:04:27,680 DISEASES FOR OVER 35 YEARS. 101 00:04:27,680 --> 00:04:28,520 DR. WOOLERY RECEIVED HER BS FROM 102 00:04:28,520 --> 00:04:31,080 THE YRT OF MARYLAND, MASTER IN 103 00:04:31,080 --> 00:04:32,600 NURSING AND PARENT AND CHILD 104 00:04:32,600 --> 00:04:34,800 NURSING FROM THE UNIVERSITY OF 105 00:04:34,800 --> 00:04:36,560 WASHINGTON, IN SEATTLE AND HER 106 00:04:36,560 --> 00:04:38,840 Ph.D. FROM THE UNIVERSITY OF 107 00:04:38,840 --> 00:04:41,000 MARYLAND BALTIMORE WITH A 108 00:04:41,000 --> 00:04:43,080 SPECIALIZATION IN SYMPTOM 109 00:04:43,080 --> 00:04:43,640 MANAGEMENT AND MEASUREMENT. 110 00:04:43,640 --> 00:04:47,000 SHE IS A CERTIFIED PEDIATRIC 111 00:04:47,000 --> 00:04:49,760 ONCOLOGY NURSE AND AN APON CHEMO 112 00:04:49,760 --> 00:04:51,360 BIOCHER ACTIVITIES AND PROJECTSY 113 00:04:51,360 --> 00:04:57,440 INSTRUCTOR, LET US BEGIN WITH 114 00:04:57,440 --> 00:04:57,920 DR. D'SOUZA. 115 00:04:57,920 --> 00:05:01,880 >> THANK YOU DR. JORDAN. 116 00:05:01,880 --> 00:05:05,080 CAN YOU SEE OUR SLIDES? 117 00:05:05,080 --> 00:05:13,000 THEY'RE JUST POPPING UP. 118 00:05:13,000 --> 00:05:13,400 >> YES. 119 00:05:13,400 --> 00:05:15,480 >> SO THIS IS THE YEAR OF 120 00:05:15,480 --> 00:05:18,000 DIVERSITY AND INCLUSION, HERE IS 121 00:05:18,000 --> 00:05:20,320 OUR ALL WOMEN TEAM FROM 5 122 00:05:20,320 --> 00:05:21,800 CONTINENTS FROM IN THE CENTER 123 00:05:21,800 --> 00:05:25,440 YOU SEE DR. CYNTHIA CHEN HO IS 124 00:05:25,440 --> 00:05:27,000 THE PRINCIPLE INVESTIGATOR AND 125 00:05:27,000 --> 00:05:31,000 EXPERT IN GM1 AND 2 GANG 126 00:05:31,000 --> 00:05:31,480 LIAISONOSEIS DISORDYS. 127 00:05:31,480 --> 00:05:33,480 OR TEAM HAS BEEN STUDYING THE 128 00:05:33,480 --> 00:05:35,640 NATURAL HISTORY OF THESE 129 00:05:35,640 --> 00:05:37,120 DECEASES FOR OVER A DECADE. 130 00:05:37,120 --> 00:05:47,320 NEXT SLIDE, PLEASE, WHAT YOU SEE 131 00:05:47,320 --> 00:05:51,120 ON GINGLIO SIDOSEIS. 132 00:05:51,120 --> 00:05:54,520 --WITH INCIDENCE OF 1 IN HUNDRED 133 00:05:54,520 --> 00:05:55,760 THOUSAND TO 200,000. 134 00:05:55,760 --> 00:05:59,560 MUTATION IN THE GENE CAUSES 135 00:05:59,560 --> 00:06:02,200 ENZYME DEFICIENCY LEADING TO A 136 00:06:02,200 --> 00:06:04,720 TOXIC ACCUMULATION OF THE 137 00:06:04,720 --> 00:06:06,320 GANGLIO CITE PREDOMINANTLY IN 138 00:06:06,320 --> 00:06:08,040 THE CENTRAL NERVOUS SYSTEM, BUT 139 00:06:08,040 --> 00:06:09,720 ALSO IN PERIPHERAL TISSUES 140 00:06:09,720 --> 00:06:16,160 INCLUDING HEART, LIVER, EYES AND 141 00:06:16,160 --> 00:06:16,920 BONES. 142 00:06:16,920 --> 00:06:17,960 [INDISCERNIBLE] ARE FORMALLY 143 00:06:17,960 --> 00:06:21,200 FATAL AND THERE ARE NO MODIFYING 144 00:06:21,200 --> 00:06:22,680 DISEASE TREATMENTS CURRENTLY 145 00:06:22,680 --> 00:06:23,480 AVAILABLE. 146 00:06:23,480 --> 00:06:29,560 MOST PATIENTS ARE GLB1 GENE, 147 00:06:29,560 --> 00:06:32,480 NEXT SLIDE, PLEASE. 148 00:06:32,480 --> 00:06:36,080 HUMAN GANGLIO SIDOSEIS, IS 149 00:06:36,080 --> 00:06:37,920 DISEASE, DISEASE PROGRESSION 150 00:06:37,920 --> 00:06:40,440 DEPENDING ON THE ACTIVITY, TYPE 151 00:06:40,440 --> 00:06:43,120 1 FORM OR INFANTILE IS THE MOST 152 00:06:43,120 --> 00:06:45,200 SERIES WITH SYMPTOM ONSET BEFORE 153 00:06:45,200 --> 00:06:48,280 12 MONTHS OF AGE AND THAT OFFER 154 00:06:48,280 --> 00:06:50,720 BEFORE AGE 2, THE CLINICAL 155 00:06:50,720 --> 00:06:52,280 FINDINGS OF HYPER TONIA AND 156 00:06:52,280 --> 00:06:53,440 DEVELOPMENT OF DELAY AND 157 00:06:53,440 --> 00:06:55,200 RECOGNITION OF THE COMMON 158 00:06:55,200 --> 00:06:57,400 FINDINGS, THE SYMPTOMS RESULTING 159 00:06:57,400 --> 00:06:59,200 FROM SERIOUS CENTRAL NERVOUS 160 00:06:59,200 --> 00:07:00,760 SYSTEM DEGENERATIONS ARE 161 00:07:00,760 --> 00:07:03,600 EVIDENCE BY PRESENCE OF 162 00:07:03,600 --> 00:07:06,120 [INDISCERNIBLE], OTHER SYMPTOMS 163 00:07:06,120 --> 00:07:08,240 INCLUDE [INDISCERNIBLE], 164 00:07:08,240 --> 00:07:11,040 SKELETAL DISPLASSIA AND CARDIO 165 00:07:11,040 --> 00:07:13,720 MYOPATHY, TYPE 2 BROKEN INTO 166 00:07:13,720 --> 00:07:16,880 WOSUBTYPES DEPENDING ON AGE OF 167 00:07:16,880 --> 00:07:18,280 ONSET AND SEVERITY. 168 00:07:18,280 --> 00:07:21,000 LATE INFANT -ILE AND JUVENILE. 169 00:07:21,000 --> 00:07:22,720 LATE INFANTILE THE SYMPTOM 170 00:07:22,720 --> 00:07:25,240 BETWEEN 12-18 MONTHS OF AGE 171 00:07:25,240 --> 00:07:27,520 CHARACTERIZED BY DEVELOPMENT OF 172 00:07:27,520 --> 00:07:30,120 [INDISCERNIBLE] OR REGRESSION. 173 00:07:30,120 --> 00:07:31,560 JUVENILE, THE SIM TOM ONSET 174 00:07:31,560 --> 00:07:34,800 BETWEEN 3-5 YEARS OF AGE, WITH 175 00:07:34,800 --> 00:07:36,800 THE PLATEAUING AND DEVELOPMENT 176 00:07:36,800 --> 00:07:38,200 OF MILESTONES, THE PRIMARY 177 00:07:38,200 --> 00:07:42,600 SYMPTOMS ARE FREQUENT QUALS FOR 178 00:07:42,600 --> 00:07:44,120 ACCORD NATION, [INDISCERNIBLE] 179 00:07:44,120 --> 00:07:45,280 AND COGNITIVE DECLINE. 180 00:07:45,280 --> 00:07:47,400 THE LAST TYPE, TYPE 3 LATE OR 181 00:07:47,400 --> 00:07:50,240 ADULT ONSET BEGINS IN THE TEENS 182 00:07:50,240 --> 00:07:54,800 OR 20S WITH THE EXTRA 183 00:07:54,800 --> 00:07:57,520 [INDISCERNIBLE] SIGNS, GATE, 184 00:07:57,520 --> 00:07:58,280 DISTURBANCE AND CARDIOMYOPATHY. 185 00:07:58,280 --> 00:07:58,720 NEXT SLIDE, PLEASE. 186 00:07:58,720 --> 00:08:02,000 HERE WE SHORTENED THE BRAIN MRI 187 00:08:02,000 --> 00:08:05,000 AND MR SPECTROSCOPY DATA OF 15 188 00:08:05,000 --> 00:08:06,760 LATE INFANTILE AND JUVENILE 189 00:08:06,760 --> 00:08:08,800 PATIENTS WHO PARTICIPATE INDEED 190 00:08:08,800 --> 00:08:09,800 THE NATURAL HISTORY. 191 00:08:09,800 --> 00:08:11,640 UNFORTUNATELY WE DON'T HAVE 192 00:08:11,640 --> 00:08:13,440 INFANTS DATA BECAUSE THEY WERE 193 00:08:13,440 --> 00:08:14,960 TOO SICK TO TRAVEL. 194 00:08:14,960 --> 00:08:16,600 THE DATA SHOWS THE SEVERITY OF 195 00:08:16,600 --> 00:08:18,600 DISEASE IN LATE INFANTILE 196 00:08:18,600 --> 00:08:20,040 COMPARED TO JUVENILE PATIENTS, 197 00:08:20,040 --> 00:08:23,840 IN THE LEFT SLIDE, ATROPY 198 00:08:23,840 --> 00:08:25,760 PLOTTED AS TD PERCENTAGE DEFICIT 199 00:08:25,760 --> 00:08:27,840 RELATED TO THE PUBLISHED TOTAL 200 00:08:27,840 --> 00:08:30,240 BRAIN WALLING FOR THE SUBJEKS 201 00:08:30,240 --> 00:08:30,560 AGE. 202 00:08:30,560 --> 00:08:33,120 THERE IS A CLEAR SEPARATION 203 00:08:33,120 --> 00:08:35,200 BETWEEN THE LATE INFANTILE AS 204 00:08:35,200 --> 00:08:38,840 SHOWN IN THE FIELD DIAMONDS AND 205 00:08:38,840 --> 00:08:40,560 JUVENILE AS SHOWN IN OPEN 206 00:08:40,560 --> 00:08:43,080 SQUARES AS TO THE GREAT VOLUME 207 00:08:43,080 --> 00:08:44,800 LOSS IN THE RIGHT SLIDE YOU SEE 208 00:08:44,800 --> 00:08:48,040 A STRONG CORRELATION IN THE 209 00:08:48,040 --> 00:08:49,440 [INDISCERNIBLE] OR NAA DEFICIT, 210 00:08:49,440 --> 00:08:52,600 TO THE PERCENTAGE OF ATROPY. 211 00:08:52,600 --> 00:08:54,720 BUT THE SLOPES ARE DISTINCTLY 212 00:08:54,720 --> 00:08:56,960 DIFFERENT FOR THE LATE INFANTILE 213 00:08:56,960 --> 00:08:59,800 AGAIN IS SHOWED IN CLOSED 214 00:08:59,800 --> 00:09:04,400 DIAMONDS AND JUVENILE SUBTYPES. 215 00:09:04,400 --> 00:09:04,800 NEXT SLIDE, PLEASE. 216 00:09:04,800 --> 00:09:07,160 HERE WE SHOW THE WALKING VIDEO 217 00:09:07,160 --> 00:09:08,920 OF TYPE 2 JUVENILE PATIENT WHO 218 00:09:08,920 --> 00:09:12,120 IS PART OF A [INDISCERNIBLE] AND 219 00:09:12,120 --> 00:09:22,760 GANGLIO SIGHT KNOCK OUT MOUSE. 220 00:09:22,760 --> 00:09:25,720 HAQUE IS THE RATIONAL FOR 221 00:09:25,720 --> 00:09:30,000 TREATMENT OF GANGLIO SIDOSEIS 222 00:09:30,000 --> 00:09:33,200 USING AAV9 GLB1 GENE REPLACEMENT 223 00:09:33,200 --> 00:09:33,800 THERAPY, WE HYPOTHESIZED THAT 224 00:09:33,800 --> 00:09:35,880 THIS COULD BE CORRECTED TO 225 00:09:35,880 --> 00:09:37,600 LEVELS SUFFICIENT TO HALT OR 226 00:09:37,600 --> 00:09:38,640 REVERSE THE PROGRESSION OF 227 00:09:38,640 --> 00:09:41,440 DISEASE BY INTRODUCING A 228 00:09:41,440 --> 00:09:42,760 TRANSGENE CONTAINING GLB1. 229 00:09:42,760 --> 00:09:44,600 AAV9 HAS BEEN SHOWN TO CROSS THE 230 00:09:44,600 --> 00:09:46,560 BLOOD BRAIN BARRIER THAT ARE 231 00:09:46,560 --> 00:09:49,240 THEN EXPRESSED WIDELY IN THE 232 00:09:49,240 --> 00:09:50,720 CENTRAL NERVOUS SYSTEM. 233 00:09:50,720 --> 00:09:54,200 THE EFFICACY OF AAV9 GLB1 234 00:09:54,200 --> 00:09:56,200 DELIVERY HAS BEEN DEMONSTRATE 235 00:09:56,200 --> 00:09:58,280 INDEED PRECLINICAL MOUSE MODEL 236 00:09:58,280 --> 00:10:01,720 OF TYPE 2 GM1 GANGLIO SIDOSEIS, 237 00:10:01,720 --> 00:10:04,280 MICE RECEIVING A SINGLE 238 00:10:04,280 --> 00:10:06,000 INTRAVENOUS DOSE SURVIVED 90% 239 00:10:06,000 --> 00:10:10,520 LONGER THAN AVENGHTED CONTROL 240 00:10:10,520 --> 00:10:11,320 MICE. 241 00:10:11,320 --> 00:10:13,480 SURVIVAL WERE ACCOMPANIED BY 242 00:10:13,480 --> 00:10:15,400 NEURAL MUSCULAR FUNCTION AND 243 00:10:15,400 --> 00:10:17,000 COGNITIVE BEHAVIOR. 244 00:10:17,000 --> 00:10:19,800 THE EFFICACY OF THE GENE 245 00:10:19,800 --> 00:10:22,160 INTRAVENOUS DELIVERY HAS ALSO 246 00:10:22,160 --> 00:10:24,120 BEEN DEMONSTRATED BY PRECLINICAL 247 00:10:24,120 --> 00:10:25,400 STUDIES CONDUCTED AT AUBURN 248 00:10:25,400 --> 00:10:28,680 UNIVERSITY IN FELINE MODEL OF 249 00:10:28,680 --> 00:10:30,680 GANGLIO SIDOSEIS. 250 00:10:30,680 --> 00:10:38,680 THE 2--THE 2 GM1 TREATED WITH 251 00:10:38,680 --> 00:10:43,800 AAV9-GLB1, 42 MONTHS THE TREATED 252 00:10:43,800 --> 00:10:46,360 ONLY DEVELOPED A SLIGHT HIND 253 00:10:46,360 --> 00:10:48,120 LIMB WEAKNESS AND WHILE THE 254 00:10:48,120 --> 00:10:49,120 HUMAN END POINT FOR 255 00:10:49,120 --> 00:10:51,400 [INDISCERNIBLE] IS REACHED AT 8 256 00:10:51,400 --> 00:10:51,640 MONTHS. 257 00:10:51,640 --> 00:10:55,200 THE STRONG POSITIVE CLINICAL 258 00:10:55,200 --> 00:10:56,520 RESPONSE AFTER INTRAVENOUS GENE 259 00:10:56,520 --> 00:10:58,240 THERAPY IS SUPPORTED BY BRAIN 260 00:10:58,240 --> 00:11:01,600 MRI AND THE MR SPECTROSCOPY 261 00:11:01,600 --> 00:11:01,920 FINDINGS. 262 00:11:01,920 --> 00:11:03,400 THE STUDIES CONDUCTED IN THE 263 00:11:03,400 --> 00:11:05,640 MOUSE AND CAT MODELS PROVIDE A 264 00:11:05,640 --> 00:11:07,680 RATIONAL FOR DESIGN OF A HUMAN 265 00:11:07,680 --> 00:11:10,000 CLINICAL STUDY AND STRONGLY 266 00:11:10,000 --> 00:11:11,720 SUPPORT POTENTIAL EFFICACY IN 267 00:11:11,720 --> 00:11:45,280 HUMANS. 268 00:11:45,280 --> 00:11:46,240 NEXT SLIDE, PLEASE. 269 00:11:46,240 --> 00:11:51,360 HERE WE SEE VIDEO OF TREATED AND 270 00:11:51,360 --> 00:11:52,200 UNCRETED CATS. 271 00:11:52,200 --> 00:12:00,440 HERE ARE THE PROTOCOL DEAILS 272 00:12:00,440 --> 00:12:03,280 AAV9-GLB1 IS A FIRST VECTOR 273 00:12:03,280 --> 00:12:12,800 CONTAINING GLB1 GENE, IT IS 274 00:12:12,800 --> 00:12:16,360 STAGE 1 SUBJECTS TREATED WITH 275 00:12:16,360 --> 00:12:18,760 THE LOW DOSE AND THE HIGH DOSE 276 00:12:18,760 --> 00:12:20,480 VECTOR, THE STARTING LOW DOSE 277 00:12:20,480 --> 00:12:22,280 WAS CHOSEN BECAUSE IT SHOWS 278 00:12:22,280 --> 00:12:31,160 STRONG EFFICACY IN THE MODEL OF 279 00:12:31,160 --> 00:12:34,000 GM1, 2 TYPE FOLLOW THE SAME 280 00:12:34,000 --> 00:12:37,000 IMMUNE MODULATION, AND SUBJECTS 281 00:12:37,000 --> 00:12:38,920 WILL BE ENROLLED AT A HIGHER 282 00:12:38,920 --> 00:12:40,480 DOSE, THE TYPE 2 PATIENTS WILL 283 00:12:40,480 --> 00:12:42,560 BE ASSISTED AT 3 YEARS WITH THE 284 00:12:42,560 --> 00:12:44,240 23 YEAR LONG-TERM FOLLOW UP AND 285 00:12:44,240 --> 00:12:46,080 TYPE 1 PATIENT WILL HAVE OUTCOME 286 00:12:46,080 --> 00:12:49,120 ASSIST AT 1 YEAR WITH THE 4 YEAR 287 00:12:49,120 --> 00:12:54,600 LONG-TERM FOLLOW UP. 288 00:12:54,600 --> 00:12:55,480 NEXT SLIDE, PLEASE. 289 00:12:55,480 --> 00:12:59,120 THE CRITERIA ARE THOAN ON THE 290 00:12:59,120 --> 00:12:59,640 LEFT. 291 00:12:59,640 --> 00:13:01,360 ENZYME DEFICIENT SUBJECTS WITH 292 00:13:01,360 --> 00:13:03,400 THE GLB1 WITH THE TYPE ONCE 293 00:13:03,400 --> 00:13:05,920 DISEASE WHRO ARE BETWEEN 6 OF 294 00:13:05,920 --> 00:13:08,040 AGE ARE ELIGIBLE FOR THE STUDY, 295 00:13:08,040 --> 00:13:14,000 SIMILARLY, TYPE 2 PATIENTS AND 296 00:13:14,000 --> 00:13:14,760 GENETICALLY DISEASE BETWEEN 1 OF 297 00:13:14,760 --> 00:13:16,520 2 YEARS OF AGE AND WITH THE 298 00:13:16,520 --> 00:13:19,240 STANDARD SCORE OF GREATER THAN 299 00:13:19,240 --> 00:13:23,120 40 ON 1-3 BEHAVIORAL SKILL ARE 300 00:13:23,120 --> 00:13:23,840 ELIGIBLE FOR ENROLLMENT. 301 00:13:23,840 --> 00:13:26,400 THE KEY STUDY ENPOINTS ARE SHOWN 302 00:13:26,400 --> 00:13:30,240 ON THE RIGHT ARE ENCLOSED SAFETY 303 00:13:30,240 --> 00:13:30,800 AND TOLERABILITY, DISEASE 304 00:13:30,800 --> 00:13:36,120 SEVERITY HAS THIS BY THE 305 00:13:36,120 --> 00:13:37,000 CLINICAL GLOBAL SCALE. 306 00:13:37,000 --> 00:13:38,440 UPRIGHT AND DEVELOPMENT ON THE 307 00:13:38,440 --> 00:13:40,960 ASSESSMENT ON THE 1 AND 3. 308 00:13:40,960 --> 00:13:46,560 THEN [INDISCERNIBLE] AND MR 309 00:13:46,560 --> 00:13:48,360 SPECROSCOPY OF ANY NAA OR 310 00:13:48,360 --> 00:14:06,720 [INDISCERNIBLE] WILL BE USED AS 311 00:14:06,720 --> 00:14:07,120 OUTCOME MEASURE. 312 00:14:07,120 --> 00:14:08,880 HERE WE SHOW THE PROTOCOL 313 00:14:08,880 --> 00:14:09,480 TIMELINE. 314 00:14:09,480 --> 00:14:12,840 WE JUST REVIEWED PRESCREENING 315 00:14:12,840 --> 00:14:15,840 PORTION, THE BASE LINE INCLUDE 316 00:14:15,840 --> 00:14:16,920 IN-PATIENT ADMISSION FOR 317 00:14:16,920 --> 00:14:42,320 DIAGNOSTIC TEST AND PROCEDURES 318 00:14:42,320 --> 00:14:47,760 SUCH AS EEG--NEXT ON DAY 0, THE 319 00:14:47,760 --> 00:14:49,120 PATIENT IS PREMEDICATED WITH 320 00:14:49,120 --> 00:14:54,480 ORAL BEN DRILL AND TYLENOL 30-60 321 00:14:54,480 --> 00:14:56,800 MINUTES BEFORE THE SING WITH THE 322 00:14:56,800 --> 00:14:58,160 GLB1 INFUSION, FOR THE NEXT 3 323 00:14:58,160 --> 00:15:01,280 DAYS, THE PATIENT WILL REMAIN ON 324 00:15:01,280 --> 00:15:06,360 AUTOSTEROIDS, NEXT SLIDE, 325 00:15:06,360 --> 00:15:10,880 PLEASE. 326 00:15:10,880 --> 00:15:11,600 NEXT SLIDE, PLEASE. 327 00:15:11,600 --> 00:15:14,200 BASED ON OUR 8 TYPE 2 PATIENTS 328 00:15:14,200 --> 00:15:15,920 SAFETY DATA, FDA APPROVAL IS 329 00:15:15,920 --> 00:15:18,240 GRANTED TO TREAT INFANTS. 330 00:15:18,240 --> 00:15:21,000 THEN WE OBTAINED CONDITIONAL 331 00:15:21,000 --> 00:15:24,600 APPROVAL FROM CEO DR. GILMAN TO 332 00:15:24,600 --> 00:15:28,480 TREAT INFANTS CONTINGENT UPON 333 00:15:28,480 --> 00:15:29,520 PEDIATRIC AND RESPIRATORY 334 00:15:29,520 --> 00:15:31,480 ELEMENTS IN THE CENTER DURING 335 00:15:31,480 --> 00:15:42,560 THE PATIENT ADMISSION, INFUSION, 336 00:15:42,560 --> 00:15:43,320 PROCEDURES. 337 00:15:43,320 --> 00:15:44,880 HOSPITAL READINESS WAS INITIATED 338 00:15:44,880 --> 00:15:45,880 FOR PATIENT SAFETY. 339 00:15:45,880 --> 00:15:54,240 NOW OUR COLLEAGUE WILL TALK WITH 340 00:15:54,240 --> 00:15:55,360 [INDISCERNIBLE] ANALYSIS. 341 00:15:55,360 --> 00:16:02,880 >> AS YOU SAW FROM DR. D'SOUZA'S 342 00:16:02,880 --> 00:16:04,360 PRESENTATION, REGARDLESS IF 343 00:16:04,360 --> 00:16:07,840 YOU'RE A POODIATRICIAN OR NURSE, 344 00:16:07,840 --> 00:16:08,480 FINDING SOLUTIONS REPRESENT A 345 00:16:08,480 --> 00:16:09,560 PIECE OF THE IMPORTANT WORK THAT 346 00:16:09,560 --> 00:16:11,600 WE ALL DO HERE AT THE NIH, WITH 347 00:16:11,600 --> 00:16:13,440 THE SUPPORT OF EXECUTIVE 348 00:16:13,440 --> 00:16:15,240 LEADERSHIP TO INSURE CLINICAL 349 00:16:15,240 --> 00:16:16,400 READINESS TO CARE FOR INSTABTS 350 00:16:16,400 --> 00:16:18,360 IN THE CLINICAL CENTER, KEY 351 00:16:18,360 --> 00:16:21,000 STAKEHOLDERS FROM 14 352 00:16:21,000 --> 00:16:23,360 DEPARTMENTS, 4 SERVICES, 353 00:16:23,360 --> 00:16:24,400 REPRESENTATIVES FROM CHILDREN'S 354 00:16:24,400 --> 00:16:25,920 NATIONAL AND 1 AMAZING RESEARCH 355 00:16:25,920 --> 00:16:28,840 TEAM CAME TOGETHER, TO CONDUCT 356 00:16:28,840 --> 00:16:32,280 THE DEEP DIVE INTO THE STUDY. 357 00:16:32,280 --> 00:16:35,600 THIS STARTED, NEXT SLIDE IS 358 00:16:35,600 --> 00:16:36,400 PERFORMING AN FMEA, A PROCESS 359 00:16:36,400 --> 00:16:39,200 MANY OF YOU ARE FAMILIAR WITH 360 00:16:39,200 --> 00:16:40,760 AND OFTENUNESSED IN THE CLIPICAL 361 00:16:40,760 --> 00:16:42,800 TRUSTEES TO EVALUATE RISKS. 362 00:16:42,800 --> 00:16:44,920 FOR THIS FIRST IN HUMAN INFANT 363 00:16:44,920 --> 00:16:49,160 GENE THERAPY PROTOCOL, THE 364 00:16:49,160 --> 00:16:49,760 PROSPECTIVE ASSESSMENT 365 00:16:49,760 --> 00:16:52,560 IDENTIFIED 194 PROTENTIAL RISKS, 366 00:16:52,560 --> 00:16:54,680 OR FAILURE MODES AND 8 MAJOR 367 00:16:54,680 --> 00:16:56,320 AREAS. 368 00:16:56,320 --> 00:16:59,040 THIS ANALYSIS HELPED IDENTIFY 369 00:16:59,040 --> 00:17:00,080 VULNERABILITIES AND INSURE 370 00:17:00,080 --> 00:17:01,360 SAFETY MEASURES WERE IN PLACE 371 00:17:01,360 --> 00:17:03,680 ACROSS THE CLINICAL CENTER PRIOR 372 00:17:03,680 --> 00:17:07,400 TO ENROLLING ANY PATIENT. 373 00:17:07,400 --> 00:17:08,040 NEXT SLIDE. 374 00:17:08,040 --> 00:17:09,800 AS PRESILLA STATED THESE INFANTS 375 00:17:09,800 --> 00:17:13,200 AND CHILDREN WOULD RECEIVE A 376 00:17:13,200 --> 00:17:15,400 SERIES OF PROCEDURES AND 377 00:17:15,400 --> 00:17:17,760 TREATMENTS SUCH AS MULTIPLE 378 00:17:17,760 --> 00:17:18,880 BLOOD DRAWS, ANESTHESIA WITH 379 00:17:18,880 --> 00:17:20,360 POSSIBLE INTERNATIONAL 380 00:17:20,360 --> 00:17:22,400 CLASSIFICATION BATION, LUMBAR 381 00:17:22,400 --> 00:17:26,680 PUNCTURES, RETUX MAB INFUSIONS, 382 00:17:26,680 --> 00:17:27,800 AAV9-GLB1 INFUSION AND MORE, ALL 383 00:17:27,800 --> 00:17:32,720 OF WHICH HAVE ASSOCIATED RISKS 384 00:17:32,720 --> 00:17:33,520 ESPECIALLY FOR INFAPTS WITH LOW 385 00:17:33,520 --> 00:17:39,600 TONE AND LOW WEIGHT. 386 00:17:39,600 --> 00:17:41,080 TO MITIGATE THESE, PLANNING WAS 387 00:17:41,080 --> 00:17:43,120 TAKEN TO ADDRESS KEY AREAS 388 00:17:43,120 --> 00:17:45,000 WITHIN THE FMEA, THE EMERGENCY 389 00:17:45,000 --> 00:17:46,560 RESPONSE PLAN NEEDED EXPANDING 390 00:17:46,560 --> 00:17:48,280 TO INCLUDE ADDITIONAL AFTER HOUR 391 00:17:48,280 --> 00:17:51,200 INTENSIVE COVERAGE AND MORE 392 00:17:51,200 --> 00:17:52,800 PEDIATRIC CODE TEAM MEMBERS, THE 393 00:17:52,800 --> 00:17:54,800 SYSTEMS REVEALED, THAT SOME OF 394 00:17:54,800 --> 00:17:55,600 THE DEPARTMENTS DIDN'T HAVE 395 00:17:55,600 --> 00:17:57,640 SUPPLIES NEEDED FOR CARE FOR 396 00:17:57,640 --> 00:17:58,200 INFANTS. 397 00:17:58,200 --> 00:18:00,760 THIS STEMMED FROM RESEARCH LAB 398 00:18:00,760 --> 00:18:03,960 TUBES, BREAST FEEDING SUPPLIES 399 00:18:03,960 --> 00:18:04,600 AND EMERGENCY EQUIPMENT. 400 00:18:04,600 --> 00:18:06,800 POLICIES AND PROCEDURES REQUIRE 401 00:18:06,800 --> 00:18:09,240 DEVELOPING USING BEST PRACTICE 402 00:18:09,240 --> 00:18:10,640 MODELS WHICH NYRA WILL GO OVER 403 00:18:10,640 --> 00:18:12,080 LATER AND IT ALSO BECAME 404 00:18:12,080 --> 00:18:13,760 APPARENT THAT ADDITIONAL 405 00:18:13,760 --> 00:18:15,720 TRAINING FOR CLINICIANS WOULD BE 406 00:18:15,720 --> 00:18:17,560 REQUIRED AT NIH, CHILDREN LESS 407 00:18:17,560 --> 00:18:19,120 THAN 3, WERE NONHISTORICLY 408 00:18:19,120 --> 00:18:20,400 ADMITTED TO THE PEDIATRIC WARD 409 00:18:20,400 --> 00:18:23,560 AND SINCE THESE INFANTS REQUIRE 410 00:18:23,560 --> 00:18:24,840 ADMISSION, AND PROCEDURES AND 411 00:18:24,840 --> 00:18:26,840 TESTS PERFORMED ACROSS THE 412 00:18:26,840 --> 00:18:28,200 CLINICAL CENTER, EXPANDING 413 00:18:28,200 --> 00:18:31,600 CLINICAL COMPETENCE WAS 414 00:18:31,600 --> 00:18:32,840 PARAMOUNT. 415 00:18:32,840 --> 00:18:33,360 NEXT NEXT. 416 00:18:33,360 --> 00:18:39,160 TO BRIDGE THESE GAPS AS PRECIL 417 00:18:39,160 --> 00:18:40,360 LA SHARED, THERAPISTS FROM 418 00:18:40,360 --> 00:18:41,600 CHILDREN'S NATIONAL JOINED THE 419 00:18:41,600 --> 00:18:44,080 CARE OF TEAM OF PROVIDERS INFANT 420 00:18:44,080 --> 00:18:45,720 SUPPLY CARTS WERE ESTABLISHED 421 00:18:45,720 --> 00:18:47,200 AND THE EMERGENCY EQUIPMENT SUCH 422 00:18:47,200 --> 00:18:49,840 AS INFABT GO BAGS WERE CREATED. 423 00:18:49,840 --> 00:18:51,240 NURSING PREPAREDNESS MEASURES 424 00:18:51,240 --> 00:18:53,480 WERE EXTENSIVELY ADDRESSED AND 425 00:18:53,480 --> 00:18:54,400 FURTHER EVALUATIONS WERE 426 00:18:54,400 --> 00:18:58,280 PERFORMED WHICH TRISH WILL NOW 427 00:18:58,280 --> 00:19:00,600 GO OVER. 428 00:19:00,600 --> 00:19:00,800 NEXT. 429 00:19:00,800 --> 00:19:01,560 >> THANK YOU. 430 00:19:01,560 --> 00:19:03,800 >> A GAP ANALYSIS WAS FORMED 431 00:19:03,800 --> 00:19:04,600 FOCUSING SPECIFICALLY ON 432 00:19:04,600 --> 00:19:06,320 CLINICAL COMPETENCE AND THE CARE 433 00:19:06,320 --> 00:19:07,960 OF IPT GREATER FANT, INFANT 434 00:19:07,960 --> 00:19:19,240 SURVEYS FLIES AND NEW PRACTICE 435 00:19:19,240 --> 00:19:19,560 GUIDELINES. 436 00:19:19,560 --> 00:19:19,840 NEXT. 437 00:19:19,840 --> 00:19:22,000 IN FOLK USING THIS ANALYSIS THE 438 00:19:22,000 --> 00:19:23,400 GAPS CAME INTO AREAS OF FOCUSED 439 00:19:23,400 --> 00:19:25,400 ON EDGEUS, THESE WERE INFANT 440 00:19:25,400 --> 00:19:26,560 EQUIPMENT, 2 INFANT EMERGENCY 441 00:19:26,560 --> 00:19:28,680 RESPONSE AND 3, EDUCATION 442 00:19:28,680 --> 00:19:36,200 TRAINING AND COMPETENCIES IN THE 443 00:19:36,200 --> 00:19:36,960 CARE OF INFANTS. 444 00:19:36,960 --> 00:19:38,440 NEXT AS KRIOF THEA MENTIONED 445 00:19:38,440 --> 00:19:40,200 BLOOD VOLUMES AND LAB TUBES 446 00:19:40,200 --> 00:19:42,560 REQUIRED A DEEP DIVE, USING THE 447 00:19:42,560 --> 00:19:44,280 BLOOD TRACKER CALCULATOR AND 448 00:19:44,280 --> 00:19:49,640 WORKING CLOSELY WITH PRESILLA ON 449 00:19:49,640 --> 00:19:51,160 PROCOLLABS WE WERE ABLE TO 450 00:19:51,160 --> 00:19:52,920 INSURE THE BLOOD VOLUME LIMITS. 451 00:19:52,920 --> 00:19:54,800 THIS ILLUSTRATED THE NEED TO 452 00:19:54,800 --> 00:19:55,600 CONTINUED DILIGENCE AND WORK 453 00:19:55,600 --> 00:19:58,080 CONTINUE TO WORK WITH YOUR 454 00:19:58,080 --> 00:19:59,880 STAKEHOLDERS ON INSTITUTING 455 00:19:59,880 --> 00:20:01,120 SMALL VOLUME COLLECTION TUBES. 456 00:20:01,120 --> 00:20:05,440 AS FOR THE SUPPLY CART, 2 CARTS 457 00:20:05,440 --> 00:20:08,200 WERE CREATED 1 FOR THE PEDIATRIC 458 00:20:08,200 --> 00:20:10,200 IN-PATIENT AREA AND 1 FOR ICU. 459 00:20:10,200 --> 00:20:12,280 IN THE EVENT THE INFANT NEEDED 460 00:20:12,280 --> 00:20:13,800 ICU SUPPORT PRIOR TO THE 461 00:20:13,800 --> 00:20:16,720 TRANSFER TO CHILDREN'S NATIONAL. 462 00:20:16,720 --> 00:20:18,440 OBTAINING AND CREATING THE CART 463 00:20:18,440 --> 00:20:20,520 WAS ONLY A PIECE OF IT. 464 00:20:20,520 --> 00:20:22,120 STAFF NEEDS TO BE FAMILIAR WITH 465 00:20:22,120 --> 00:20:25,240 THE CONTENTS, THE CART CONTAINED 466 00:20:25,240 --> 00:20:27,560 CARDIOVASCULAR SUPPLIES, AIR WAY 467 00:20:27,560 --> 00:20:30,400 SUPPLIES, SUCH AS BAG MASK, 468 00:20:30,400 --> 00:20:32,000 NAISAL [INDISCERNIBLE], AND IV 469 00:20:32,000 --> 00:20:33,720 EQUIPMENT AND [INDISCERNIBLE] 470 00:20:33,720 --> 00:20:35,080 EQUIPMENT, FEEDING SUPPLIES, 471 00:20:35,080 --> 00:20:36,800 AMONG OTHER THINGS. 472 00:20:36,800 --> 00:20:38,800 ADDITIONALLY, HAVING AN INFANT 473 00:20:38,800 --> 00:20:41,480 STAY IN PATIENT WHO WAS STILL 474 00:20:41,480 --> 00:20:43,400 BREAST FEEDING GAME WITH ITS OWN 475 00:20:43,400 --> 00:20:47,520 SET OF GAPS. 476 00:20:47,520 --> 00:20:48,840 NEXT, PLEASE. 477 00:20:48,840 --> 00:20:51,320 TO EXPAND EVEN FURTHER ON THE 478 00:20:51,320 --> 00:20:53,120 EMERGENCY RESPONSE EFFORTS, CODE 479 00:20:53,120 --> 00:20:53,720 ROLES AND RESPONSIBILITIES 480 00:20:53,720 --> 00:20:55,720 SHIFTED SLIGHTLY AND IT WAS 481 00:20:55,720 --> 00:20:56,920 ESTABLISHED IN THE EVENT THAT IN 482 00:20:56,920 --> 00:21:00,480 A CODE RESPONSE WAS NEEDED THE 483 00:21:00,480 --> 00:21:03,440 CHILDREN'S NATIONAL PICU 484 00:21:03,440 --> 00:21:07,280 ATTENDING WOULD RUN THE CODE, 485 00:21:07,280 --> 00:21:09,760 NURSES WERE TRAINED IN THIS 486 00:21:09,760 --> 00:21:11,400 SIMULATION WITH CHILDREN'S 487 00:21:11,400 --> 00:21:14,040 NATIONAL PICU ATTEND EXPTION 488 00:21:14,040 --> 00:21:20,200 EMERGENCY RESPONSE CODE AND FOR 489 00:21:20,200 --> 00:21:22,960 EMERGENCY RESPONSES. 490 00:21:22,960 --> 00:21:26,720 AND INSCREMENTS FROM 5-KILOS TO 491 00:21:26,720 --> 00:21:27,200 [INDISCERNIBLE]. 492 00:21:27,200 --> 00:21:28,640 IF A CODE WERE TO CONSIDER 493 00:21:28,640 --> 00:21:30,280 DURING THE PROCEDURE AWAY FROM 494 00:21:30,280 --> 00:21:32,040 THE IN-PATIENT UNIT, THE ICU 495 00:21:32,040 --> 00:21:33,800 CODE RESPONSE IS USUALLY WITHIN 496 00:21:33,800 --> 00:21:34,760 3-5 MINUTES. 497 00:21:34,760 --> 00:21:37,720 BUT NOT ALL CODE CARTS 498 00:21:37,720 --> 00:21:38,600 THROUGHOUT THE CLINICAL CENTER 499 00:21:38,600 --> 00:21:40,640 WERE IN POSITION OF AN ICU CART 500 00:21:40,640 --> 00:21:42,880 WHICH WAS REPLETE WITH INFANT 501 00:21:42,880 --> 00:21:44,280 SUPPLIES, SO A RESPIRATORY GO 502 00:21:44,280 --> 00:21:45,800 BAG WAS CREATED TO TRAVEL WITH 503 00:21:45,800 --> 00:21:49,520 THE PATIENT THROUGHOUT THE 504 00:21:49,520 --> 00:21:50,720 CLINICAL CENTER. 505 00:21:50,720 --> 00:21:52,920 THIS CONTENT INCLUDED SUPPLIES 506 00:21:52,920 --> 00:21:54,680 NEEDED FOR THE FIRST FAIF 507 00:21:54,680 --> 00:21:57,440 MINUTES UNTIL THE IRIVAL OF THE 508 00:21:57,440 --> 00:21:59,320 ICU CODE TEAM. 509 00:21:59,320 --> 00:22:04,720 THIS INCLUDED INFABT AND CHILD 510 00:22:04,720 --> 00:22:05,400 MASKS, NONREBREATHER, SUCTION 511 00:22:05,400 --> 00:22:07,400 SUPPLIES AND IV STARTS AMONG THE 512 00:22:07,400 --> 00:22:10,280 OTHER FEW THINGS. 513 00:22:10,280 --> 00:22:10,800 NEXT PLEASE. 514 00:22:10,800 --> 00:22:12,120 EXTENSE OF EDUCATION AND 515 00:22:12,120 --> 00:22:12,800 TRAINING METHODOLOGIES WERE PUT 516 00:22:12,800 --> 00:22:15,480 IN PLACE FOR OUR PEDIATRIC 517 00:22:15,480 --> 00:22:19,320 NURSES, OUR ICU NURSES, OUR PICU 518 00:22:19,320 --> 00:22:21,200 NURSES AND IR NURSES, AFTER 519 00:22:21,200 --> 00:22:22,120 DISCUSSIONS WITH THE RESEARCH 520 00:22:22,120 --> 00:22:23,800 TEAM TO BETTER UNDERSTAND THE 521 00:22:23,800 --> 00:22:24,840 COMPLEXITIES OF DISEASE PROCESS 522 00:22:24,840 --> 00:22:27,200 AND TREATMENT, WE WERE WAIBL TO 523 00:22:27,200 --> 00:22:28,240 DEVELOP A TRAINING PROGRAM WITH 524 00:22:28,240 --> 00:22:32,440 THE FOCUS ON POTENTIAL EMERGENCY 525 00:22:32,440 --> 00:22:32,880 SITUATIONS. 526 00:22:32,880 --> 00:22:34,120 THESE INCLUDED ANAPHYLAXIS DUE 527 00:22:34,120 --> 00:22:35,960 TO GENE TRANSFER TREATMENT, 528 00:22:35,960 --> 00:22:37,400 SHOCK MANAGEMENT AND SEIZURE 529 00:22:37,400 --> 00:22:40,400 MANAGEMENT TO DUE TO THE DISEASE 530 00:22:40,400 --> 00:22:42,400 PROGRESSION AND CARDIAC 531 00:22:42,400 --> 00:22:47,360 ARRHYTHMIA SPECIFICALLY AVT DUE 532 00:22:47,360 --> 00:22:48,920 TO FEMORAL C-LINE, THE TRAINING 533 00:22:48,920 --> 00:22:51,880 FELL INTO 4 BUCKETS, DIDACTIC 534 00:22:51,880 --> 00:22:53,480 WHICH INCLUDED INFANT CARE, 535 00:22:53,480 --> 00:22:54,600 EMERGENCY RESPONSE AND 536 00:22:54,600 --> 00:22:57,200 MANAGEMENT OF POTENTIAL RISKS TO 537 00:22:57,200 --> 00:22:59,720 THE SKILLS LAB INCLUDED HANDS ON 538 00:22:59,720 --> 00:23:03,200 SKILLS SUCH AS INFANT MASK, 539 00:23:03,200 --> 00:23:04,520 RESPIRATORY ADJUNCTS, IO 540 00:23:04,520 --> 00:23:05,200 PLACEMENT AND RAPID SEQUENCE 541 00:23:05,200 --> 00:23:06,040 INTERNATIONAL CLASSIFICATION 542 00:23:06,040 --> 00:23:08,360 BATION AND CHEMO DYNAMIC TRIP 543 00:23:08,360 --> 00:23:10,160 MANAGEMENT AND ARRHYTHMIA 544 00:23:10,160 --> 00:23:11,080 MANAGEMENT. 545 00:23:11,080 --> 00:23:14,200 AND THE STIMULATION LAB, 546 00:23:14,200 --> 00:23:15,200 MULTIDISCIPLINARY NIH TEAMS 547 00:23:15,200 --> 00:23:17,880 WORKED TOGETHER TO PRACTICE THE 548 00:23:17,880 --> 00:23:19,480 MANAGEMENT OF ANAPHYLAXIS SVT, 549 00:23:19,480 --> 00:23:22,080 USER MANAGEMENT AND SHOCK 550 00:23:22,080 --> 00:23:22,760 MANAGEMENT. 551 00:23:22,760 --> 00:23:25,200 THE INSTITUTE SIMULATION 552 00:23:25,200 --> 00:23:26,360 INVOLVED OUR NIH 553 00:23:26,360 --> 00:23:27,400 MULTIDISCIPLINARY TEAMS SUCH AS 554 00:23:27,400 --> 00:23:30,680 P A C TEAM AND ICU NURSES AND 555 00:23:30,680 --> 00:23:33,120 CHILDREN'S NATIONAL INTSEMMIST 556 00:23:33,120 --> 00:23:34,800 AND THEIR RESPIRATORY THERAPIST 557 00:23:34,800 --> 00:23:35,400 ON 1 UNIT. 558 00:23:35,400 --> 00:23:37,320 ROSA WILL NOW WILL TAKE A DEEPER 559 00:23:37,320 --> 00:23:59,040 DIVE AND PRESENT OUR EDUCATION 560 00:23:59,040 --> 00:24:00,720 AND TRAINING PROGRAM. 561 00:24:00,720 --> 00:24:02,680 OUR PROVIDERS AND NATURAL 562 00:24:02,680 --> 00:24:04,320 PROVIDERS UNFAMILIAR WITH OUR 563 00:24:04,320 --> 00:24:04,720 CLINICAL SETTING. 564 00:24:04,720 --> 00:24:06,640 THIS THAT IS WHERE IT WAS 565 00:24:06,640 --> 00:24:09,320 CRUCIAL TO REVERSE EVERY 566 00:24:09,320 --> 00:24:10,760 POTENTIAL COMPLICATION WITH THE 567 00:24:10,760 --> 00:24:11,800 TEAMS, THE PRIMARY PURPOSE OF 568 00:24:11,800 --> 00:24:16,440 THE EDUCATION AND TRAINING 569 00:24:16,440 --> 00:24:18,040 PROGRAM WAS TO PREAND SUFFERING 570 00:24:18,040 --> 00:24:22,600 FROM GM 1 IS ADMITTED TOA A NEW 571 00:24:22,600 --> 00:24:24,720 AND LEARNING NEEDS ASSESSMENT 572 00:24:24,720 --> 00:24:26,680 AND IDENTIFIED THE CARING FOR 573 00:24:26,680 --> 00:24:27,400 UNFAMILIAR CARING POPULATION 574 00:24:27,400 --> 00:24:31,040 WITH A HIGH RISK OF 575 00:24:31,040 --> 00:24:32,600 COMPLICATIONS CREATED A GAP IN 576 00:24:32,600 --> 00:24:35,680 NURSES CALL FOR LEVEL, 577 00:24:35,680 --> 00:24:37,360 INCREASING ANXIOUS, STRESS AND 578 00:24:37,360 --> 00:24:38,800 AND FUNCTION EFFECTIVELY IN THE 579 00:24:38,800 --> 00:24:57,440 EVENT OF AN EMERGENCY. 580 00:24:57,440 --> 00:24:59,400 THOSE WERE ICU NURSES, WHO AS 581 00:24:59,400 --> 00:25:00,960 PART OF THE CODE BLUE TEAM WOULD 582 00:25:00,960 --> 00:25:03,200 RESPOND TO AN INFANT EMERGENCY, 583 00:25:03,200 --> 00:25:04,920 OUR PEDIATRIC CLINICAL RESEARCH 584 00:25:04,920 --> 00:25:09,600 NURSES AS A PRIMARY CAREGIVERS, 585 00:25:09,600 --> 00:25:11,400 OUR PERIOPERATIVE ANESTHESIA 586 00:25:11,400 --> 00:25:16,760 UNIT AND RADIOLOGY NURSES, 587 00:25:16,760 --> 00:25:19,880 CARING FOR INFANTS WITH A TEAM 588 00:25:19,880 --> 00:25:22,280 WE DECIDED MULTIMODAL 589 00:25:22,280 --> 00:25:23,240 EVIDENCE-BASED APPROACH 590 00:25:23,240 --> 00:25:25,480 COMBINING LECTURES AND HANDS ON 591 00:25:25,480 --> 00:25:26,600 SKILLS, AND SIMULATIONS WOULD 592 00:25:26,600 --> 00:25:28,240 PROVIDE THE BEST OPPORTUNITY FOR 593 00:25:28,240 --> 00:25:29,920 NURSES TO IMPROVE THE 594 00:25:29,920 --> 00:25:32,280 CONFIDENCE, KNOWLEDGE AND SKILLS 595 00:25:32,280 --> 00:25:34,320 NEEDED TO ENHANCE PATIENT SAFETY 596 00:25:34,320 --> 00:25:38,360 AND PATIENT OUTCOMES. 597 00:25:38,360 --> 00:25:39,040 NEXT. 598 00:25:39,040 --> 00:25:41,360 EIGHT SESSIONS, OF INTENSE 599 00:25:41,360 --> 00:25:41,960 EDUCATIONAL TRAINING OCCURRED 600 00:25:41,960 --> 00:25:43,800 OVER A PERIOD OF 3 MONTHS. 601 00:25:43,800 --> 00:25:46,800 IN PREPARATION FOR THE FIRST 602 00:25:46,800 --> 00:25:49,880 INFANTS ADMISSION, WE PURPOSELY 603 00:25:49,880 --> 00:25:50,960 MIXED THE NURSING DISCIPLINES 604 00:25:50,960 --> 00:25:53,400 ATTENDING EACH CLASS SUCH AS 605 00:25:53,400 --> 00:25:54,920 PEDIATRIC AND ICU NURSES TO 606 00:25:54,920 --> 00:25:59,520 ENHANCE TEAM COLLABORATION AND 607 00:25:59,520 --> 00:26:00,160 COMMUNICATION. 608 00:26:00,160 --> 00:26:01,880 OUR INTERVENTION WAS DIVIDED IN 609 00:26:01,880 --> 00:26:04,320 3 PHASES, IN THE FIRST FACE WE 610 00:26:04,320 --> 00:26:06,240 WERE PRESENTED WITH THE DISEASE 611 00:26:06,240 --> 00:26:07,800 PROCESS AND PROTOCOL, POETIC 612 00:26:07,800 --> 00:26:10,080 TEBTIAL COMPLICATIONS AND INFANT 613 00:26:10,080 --> 00:26:12,080 FOCUSED EMERGENCY CARE. 614 00:26:12,080 --> 00:26:14,400 NURSES PARTICIPATED ON CANCELED 615 00:26:14,400 --> 00:26:16,160 SKILLS WHICH INCLUDED 616 00:26:16,160 --> 00:26:18,160 FAMILIARIZATION WITH EMPHASIZED 617 00:26:18,160 --> 00:26:19,520 EQUIPMENT, RESPIRATORY SUPPORT 618 00:26:19,520 --> 00:26:20,960 AND WEIGHT BASED MEDICATION 619 00:26:20,960 --> 00:26:25,280 ADMINISTRATION. 620 00:26:25,280 --> 00:26:26,120 NEXT SLIDE, PLEASE. 621 00:26:26,120 --> 00:26:28,360 IN FACE 2 WE CONDUCTED A TOTAL 622 00:26:28,360 --> 00:26:30,840 OF 24 INTEGRATED HIGH FIDELITY 623 00:26:30,840 --> 00:26:32,880 SIMULATION WTION OUR NIH 624 00:26:32,880 --> 00:26:33,960 CLINICAL PROVIDERS, THE 625 00:26:33,960 --> 00:26:36,040 SIMULATIONS WERE CONDUCT INDEED 626 00:26:36,040 --> 00:26:38,880 A SAFE NONTHREATENING LEARNING 627 00:26:38,880 --> 00:26:40,280 ENVIRONMENT, THAT ALLOWED TO 628 00:26:40,280 --> 00:26:42,160 EXPERIENCE HIGH RISK SITUATIONS, 629 00:26:42,160 --> 00:26:43,000 THAT COULD LATER TRANSFER 630 00:26:43,000 --> 00:26:47,200 FOCUSED ON REAL LIFE. 631 00:26:47,200 --> 00:26:48,240 SIMULATION SPECIALIST ALONG WITH 632 00:26:48,240 --> 00:26:51,120 CRITICAL CARE AND NURSING 633 00:26:51,120 --> 00:26:52,640 EXPERTS DEVELOP 3 CASE SCENARIOS 634 00:26:52,640 --> 00:26:54,920 THAT WILL DRIVE THE FOCUS 635 00:26:54,920 --> 00:26:56,840 SIMULATIONS, MANAGEMENT OF 636 00:26:56,840 --> 00:26:59,080 SEIZURES AND SUPER VENTRICULAR 637 00:26:59,080 --> 00:26:59,720 TACHYCARDIA, THE SIMULATIONS 638 00:26:59,720 --> 00:27:01,520 WERE BRACE OFFICE OF DIVERSITY 639 00:27:01,520 --> 00:27:02,240 POTENTIAL COMPLIKAIGHTZS OF 640 00:27:02,240 --> 00:27:09,840 DISEASE AND CLINICAL TRIAL. 641 00:27:09,840 --> 00:27:10,600 NEXT SLIDE, PLEASE. 642 00:27:10,600 --> 00:27:12,480 LASTLY IN PHASE 3, WE CONDUCTED 643 00:27:12,480 --> 00:27:15,600 A TOTAL OF SIMULATIONS BRING 644 00:27:15,600 --> 00:27:18,320 TOGETHER ICU, NIH NURSES AND 645 00:27:18,320 --> 00:27:18,920 PROEDUCATIONALLERS CHILDREN'S 646 00:27:18,920 --> 00:27:21,680 NATIONAL PROVIDERS AND HIGH 647 00:27:21,680 --> 00:27:25,800 INS10ITY SIMULATIONS. 648 00:27:25,800 --> 00:27:26,120 NEXT. 649 00:27:26,120 --> 00:27:26,760 NEXT SLIDE. 650 00:27:26,760 --> 00:27:29,200 FOCUSED ON EVALUATE OUR PROGRAM 651 00:27:29,200 --> 00:27:31,000 OUTCOMES, 2 INSTRUMENTS WERE 652 00:27:31,000 --> 00:27:33,800 USED, THE FIRST FRIEWMENT IS A 653 00:27:33,800 --> 00:27:36,520 PEDIATRIC ADVANCED LIFE SUPPORT 654 00:27:36,520 --> 00:27:38,520 SKILL SELF-EFFICACY INVENTORY ON 655 00:27:38,520 --> 00:27:44,760 THE P A LS SSEI, THIS AN 656 00:27:44,760 --> 00:27:50,440 EVALUATOR TOOL WITH CRONBACH'S A 657 00:27:50,440 --> 00:27:51,480 .88 AND CVI = 1. 658 00:27:51,480 --> 00:27:53,360 AND THIS IS AN EVALUATION BY 659 00:27:53,360 --> 00:27:55,200 COMPARING PREE AND POST 660 00:27:55,200 --> 00:27:55,800 INTERVENTION RESULTS. 661 00:27:55,800 --> 00:27:57,520 THE SECOND INSTRUMENT WE USED 662 00:27:57,520 --> 00:28:00,640 WAS A 5 QUESTION ANONYMOUS 663 00:28:00,640 --> 00:28:01,680 SURVEY TO,A SESES SIMULATION 664 00:28:01,680 --> 00:28:07,200 BASED EXPERIENCE. 665 00:28:07,200 --> 00:28:07,600 NEXT SLIDE, PLEASE. 666 00:28:07,600 --> 00:28:09,400 THE IPT GREATER VENTERY TOOL IS 667 00:28:09,400 --> 00:28:13,320 A SCALE WITH 19 QUESTIONS. 668 00:28:13,320 --> 00:28:15,600 THAT ALLOWS NURSES TO 669 00:28:15,600 --> 00:28:16,720 [INDISCERNIBLE] SELF-CONFIDENCE 670 00:28:16,720 --> 00:28:19,400 WITH PERFORMS PEDEIAT VERSE US 671 00:28:19,400 --> 00:28:19,920 [INDISCERNIBLE] SKILLS. 672 00:28:19,920 --> 00:28:23,000 THE SURVEY ON THE CATEGORIES OF 673 00:28:23,000 --> 00:28:24,440 AMERICAN HEART ASSOCIATION 674 00:28:24,440 --> 00:28:26,920 PEDIATRIC AND SLICE SUPPORT 675 00:28:26,920 --> 00:28:28,360 PSYCHOMODAL COURSE OBJECTIVES. 676 00:28:28,360 --> 00:28:30,000 THAT ADDRESS EVALUATION, 677 00:28:30,000 --> 00:28:32,000 IDENTIFICATION, AND ISHT 678 00:28:32,000 --> 00:28:33,480 VENTION, ADVANCED INTERVENTIONS, 679 00:28:33,480 --> 00:28:35,120 AND TREATMENT IN PEDIATRIC 680 00:28:35,120 --> 00:28:39,200 EMERGENCY, NEXT SLIDE, PLEASE. 681 00:28:39,200 --> 00:28:41,160 THE MEASUREMENT OF INTEREST TO 682 00:28:41,160 --> 00:28:43,080 US WAS WHETHER PARTICIPANTS 683 00:28:43,080 --> 00:28:44,480 CONFIDENCE SCORES CHANGED WITH 684 00:28:44,480 --> 00:28:46,800 THE TRAINING OF SIMULATIONS. 685 00:28:46,800 --> 00:28:48,680 WE CONDUCTED A DESCRIPTIVE 686 00:28:48,680 --> 00:28:50,000 STATISTICAL ANALYSIS AND 687 00:28:50,000 --> 00:28:52,160 CALCULATED THE CHANGE FOR EACH 688 00:28:52,160 --> 00:28:54,120 GROUP BEFORE AND AFTER EACH 689 00:28:54,120 --> 00:28:54,640 SIMULATION. 690 00:28:54,640 --> 00:28:56,560 THE GRAPH HERE DEPICTS EACH 691 00:28:56,560 --> 00:28:58,840 NURSING GROUP, THE HIGHER THE 692 00:28:58,840 --> 00:29:00,800 MEAN VALUE, THE HIGHER THE 693 00:29:00,800 --> 00:29:01,400 SELF-REPORTED IMPROVEMENT, WE 694 00:29:01,400 --> 00:29:03,280 SEE THAT THE AVERAGE HIGHEST 695 00:29:03,280 --> 00:29:05,440 OVERALL RESULTS WERE 3 696 00:29:05,440 --> 00:29:09,240 QUESTIONS, ASKING THE CONFIDENCE 697 00:29:09,240 --> 00:29:11,480 LEVEL, ADMINNESTERS OXYGEN VIA 698 00:29:11,480 --> 00:29:12,440 NONREBREATHER, ASSISTING WITH 699 00:29:12,440 --> 00:29:14,000 THE PEDIATRIC AIR WAY AND 700 00:29:14,000 --> 00:29:16,480 ASSISTING WITH THE PEDIATRIC 701 00:29:16,480 --> 00:29:16,720 PATIENT. 702 00:29:16,720 --> 00:29:17,520 THESE RESULTS REFLECT OUR 703 00:29:17,520 --> 00:29:20,120 TRAINING EMPHASIS ON THE 704 00:29:20,120 --> 00:29:21,520 IMPORTANCE OF MANAGING A 705 00:29:21,520 --> 00:29:26,600 PEDIATRIC AIR WAY ESPECIALLY 706 00:29:26,600 --> 00:29:30,040 THAT OF AN INFANT OVER AN ADULT 707 00:29:30,040 --> 00:29:30,400 AIR WAY. 708 00:29:30,400 --> 00:29:32,920 OVER ALL EVERY SINGLE 709 00:29:32,920 --> 00:29:33,880 PSYCHOMOTOR SKILL. 710 00:29:33,880 --> 00:29:35,720 BUT BEYOND THE STATISTICALLY 711 00:29:35,720 --> 00:29:37,280 IMPROVEMENT, IT IS CRITTAL TO 712 00:29:37,280 --> 00:29:38,240 UNDERSTAND THE CLINICAL 713 00:29:38,240 --> 00:29:39,520 SIGNIFICANCE OF IMPROVING THE 714 00:29:39,520 --> 00:29:41,240 NURSES CALL FOR LEVEL, ABILITY 715 00:29:41,240 --> 00:29:43,120 TO ACT PROMPTLY WHEN TIME IS OF 716 00:29:43,120 --> 00:29:47,680 THE ESSENCE. 717 00:29:47,680 --> 00:29:48,760 NEXT SLIDE, PLEASE. 718 00:29:48,760 --> 00:29:51,480 THE SECOND TRIEWMENT SIMULATION 719 00:29:51,480 --> 00:29:52,920 BASED EXPERIENCE SURVEY 720 00:29:52,920 --> 00:29:53,680 DEMONSTRATED ACTIVITIES WERE 721 00:29:53,680 --> 00:29:55,760 WELL RECEIVED BY ALL WITH NURSES 722 00:29:55,760 --> 00:29:57,480 SHARING OW SIMULATIONINGS HELP 723 00:29:57,480 --> 00:29:58,920 WIDE TEAM COMMUNICATION AND 724 00:29:58,920 --> 00:30:00,640 UNDERSTANDING THE PROTOCOL, AND 725 00:30:00,640 --> 00:30:01,960 INCREASING THE CONFIDENCE TO 726 00:30:01,960 --> 00:30:04,120 CARE FOR THIS POPULATION. 727 00:30:04,120 --> 00:30:05,400 I WANT TO BRING TO YOUR 728 00:30:05,400 --> 00:30:07,320 ATTENTION THE COMMENT ON HOW 729 00:30:07,320 --> 00:30:11,840 THEY APPRECIATED A SIMULATION OF 730 00:30:11,840 --> 00:30:13,240 AN ALLERGIC REACTION. 731 00:30:13,240 --> 00:30:13,840 NEXT SLIDE, PLEASE. 732 00:30:13,840 --> 00:30:15,840 WE WANTED TO SHARE A STORY, THAT 733 00:30:15,840 --> 00:30:18,320 REFLECTS THE IMPACT OF THE 734 00:30:18,320 --> 00:30:20,160 SIMULATIONS AND TRAINING, IF YOU 735 00:30:20,160 --> 00:30:21,800 REMEMBER WE CONDUCT A 736 00:30:21,800 --> 00:30:24,640 SIMULATIONS OF INFANT 737 00:30:24,640 --> 00:30:25,920 EXPERIENCING ANAPHYLAXIS ON A 738 00:30:25,920 --> 00:30:28,840 FOLLOW UP OUTPATIENT VISIT, 1 OF 739 00:30:28,840 --> 00:30:31,840 OUR INFANTS SUFFERING FROM GM 1 740 00:30:31,840 --> 00:30:32,800 DEVELOPED SEVERE ANAPHYLAXIS, A 741 00:30:32,800 --> 00:30:37,800 CODE WAS CALLED OUR ICU TEAM 742 00:30:37,800 --> 00:30:38,800 PEDIATRIC NURSES, PROVIDERS AND 743 00:30:38,800 --> 00:30:41,560 CHILDREN'S HOSPITAL TEAM WORKED 744 00:30:41,560 --> 00:30:43,440 IN SYNCHRONY QUICKLY REVERSING 745 00:30:43,440 --> 00:30:45,160 THE SEVERE ALLERGIC REACTION, 1 746 00:30:45,160 --> 00:30:46,880 OF THE PEDIATRIC NURSES LATER 747 00:30:46,880 --> 00:30:48,520 CAME TO ME, SAID SIMULATION 748 00:30:48,520 --> 00:30:49,600 HELPED ME REMEMBER WHAT TO DO. 749 00:30:49,600 --> 00:30:52,760 AND NOW, I WILL TURN IT OVER TO 750 00:30:52,760 --> 00:31:08,720 MY COLLEAGUE DR. MYRA WOOLERY. 751 00:31:08,720 --> 00:31:10,080 >> THANK YOU ROSA, NOW I WILL 752 00:31:10,080 --> 00:31:12,000 REVIEW THE POLICIES AND 753 00:31:12,000 --> 00:31:13,280 PRACTICES OF RELATED TO 754 00:31:13,280 --> 00:31:14,800 PEDIATRIC CARE FOR INFANT 755 00:31:14,800 --> 00:31:17,240 POPULATION, FOR PURPOSE OF THIS 756 00:31:17,240 --> 00:31:23,160 PRESENTATION I WILL FOCUS 3 757 00:31:23,160 --> 00:31:24,600 AREAS, VENOUS ACCESS AND 758 00:31:24,600 --> 00:31:27,720 MANAGEMENT AND MANAGEMENT, CHEMO 759 00:31:27,720 --> 00:31:28,400 THERAPY, BIOTHERAPY 760 00:31:28,400 --> 00:31:29,440 ADMINISTRATION AND BREAST 761 00:31:29,440 --> 00:31:32,200 FEEDING AND EXPRESSED BREAST 762 00:31:32,200 --> 00:31:32,800 MILK. 763 00:31:32,800 --> 00:31:34,400 FIRST EXISTING VENOUS ACCESS TO 764 00:31:34,400 --> 00:31:35,320 DEVICE PLACEMENT AND MANAGEMENT 765 00:31:35,320 --> 00:31:38,040 OF DOCK YOU WANTS WERE REVIEWED. 766 00:31:38,040 --> 00:31:40,720 FOLLOWED BY BENCHMARKING WITH 767 00:31:40,720 --> 00:31:42,920 INSTITUTIONS THAT ADMIT INFANTS 768 00:31:42,920 --> 00:31:44,600 AND PLACE CENTRAL ACCESS 769 00:31:44,600 --> 00:31:46,120 DEVICES, THE DATA WAS SUMMARIZED 770 00:31:46,120 --> 00:31:48,320 AFTER REVIEW AND ANALYSIS, THERE 771 00:31:48,320 --> 00:31:50,400 WAS DISCUSSION AMONG THE 772 00:31:50,400 --> 00:31:51,800 RESEARCH TEAM AND DISCIPLINARY 773 00:31:51,800 --> 00:31:55,560 TEAM MEMBERS TO DECIDE THE BEST 774 00:31:55,560 --> 00:31:56,120 APPROACH. 775 00:31:56,120 --> 00:31:59,160 PERIPHERALLY INSERTED CENTRAL 776 00:31:59,160 --> 00:32:01,480 VENOUS CATHETERS REFERRED TO AS 777 00:32:01,480 --> 00:32:03,000 PICCPLACED IN THE FEMORAL VAIN 778 00:32:03,000 --> 00:32:04,520 WAS THE BEST OPTION FOR THIS 779 00:32:04,520 --> 00:32:05,000 STUDY. 780 00:32:05,000 --> 00:32:06,880 DUE TO LIMITED EXPERIENCES 781 00:32:06,880 --> 00:32:08,600 PLACING PICKS IN SMALL CHILDREN 782 00:32:08,600 --> 00:32:11,000 AND INFANTS IT WAS DECIDED THE 783 00:32:11,000 --> 00:32:14,600 PIC WOULD BE INSERTED AT THE 784 00:32:14,600 --> 00:32:16,040 CHILDREN'S NATIONAL HOSPITAL 785 00:32:16,040 --> 00:32:18,000 ASSISTING PICK FLUSH GUIDELINES 786 00:32:18,000 --> 00:32:20,400 WERE MODIFIED FOR INFANT AND 787 00:32:20,400 --> 00:32:21,520 FEMORAL PLACEMENT, A DOCUMENT 788 00:32:21,520 --> 00:32:23,160 CREATED REGARDING THE CARE, 789 00:32:23,160 --> 00:32:25,600 MAINTENANCE AND TROUBLE SHOOTING 790 00:32:25,600 --> 00:32:31,440 OF PICCs IN INFANTS. 791 00:32:31,440 --> 00:32:32,840 NEXT SLIDE, PLEASE. 792 00:32:32,840 --> 00:32:37,000 ALTHOUGH RETUX MAB A MONOCLONAL 793 00:32:37,000 --> 00:32:40,120 ANTIBODY IS ADMINNISTED IN MANY 794 00:32:40,120 --> 00:32:41,520 POPULATIONS, ADMINISTRATION AT 795 00:32:41,520 --> 00:32:43,240 THE INFANT POPULATION HAS NOT 796 00:32:43,240 --> 00:32:46,000 OCCURRED AT THE CLINICAL CENTER. 797 00:32:46,000 --> 00:32:49,080 THIS WAS IDENTIFIED FOR 798 00:32:49,080 --> 00:32:52,520 MONITORING INFANTS WITH RETUX 799 00:32:52,520 --> 00:32:56,680 MAB, [INDISCERNIBLE] ONCOLOGY 800 00:32:56,680 --> 00:32:59,480 NURSES CHEMO THERAPY, BIOTHERAPY 801 00:32:59,480 --> 00:32:59,800 INSTRUCTIONS. 802 00:32:59,800 --> 00:33:02,040 BASED ON THE REVIEW OF LITIATURE 803 00:33:02,040 --> 00:33:03,480 AND, MAAING IT WAS DETERMINED 804 00:33:03,480 --> 00:33:05,840 THAT THE VITAL SIGN MONITORING 805 00:33:05,840 --> 00:33:07,880 WAS CONSISTENT WITH CLINICAL 806 00:33:07,880 --> 00:33:09,200 CENTER NURSING DOCUMENTS 807 00:33:09,200 --> 00:33:11,280 INCLUDING OBTAINING VITAL SIGNS 808 00:33:11,280 --> 00:33:13,600 AT BASE LINE AND WITH EACH DOSE 809 00:33:13,600 --> 00:33:15,600 ESCALATION WHICH IS TYPICAL WITH 810 00:33:15,600 --> 00:33:17,600 RETUXA MAB, HOWEVER, PLACING 811 00:33:17,600 --> 00:33:19,800 INFANTS OF THE MONITORS WAS VERY 812 00:33:19,800 --> 00:33:20,560 LOW. 813 00:33:20,560 --> 00:33:21,640 IN THE IN-PATIENT SETTING MOST 814 00:33:21,640 --> 00:33:23,640 OF THEM DID PLACE THEM ON 815 00:33:23,640 --> 00:33:24,960 CARDIAC MONITORS DUE TO THE 816 00:33:24,960 --> 00:33:27,400 AVAILABILITY OF THE MONITORS, 817 00:33:27,400 --> 00:33:28,800 HOWEVER, IN THE OUTPATIENT THIS 818 00:33:28,800 --> 00:33:30,280 WAS DEPENDENT ON WHETHER OR IN 819 00:33:30,280 --> 00:33:32,360 THE THEY HAD CARDIAC MONITOR 820 00:33:32,360 --> 00:33:33,440 AVAILABILITY, HOWEVER IF THEY 821 00:33:33,440 --> 00:33:35,480 DID NOT HAVE CARDIAC MONITOR 822 00:33:35,480 --> 00:33:37,440 AVAILABILITY, ALL OF THEM 823 00:33:37,440 --> 00:33:40,000 REPORTED PLACING INFANTS ON THE 824 00:33:40,000 --> 00:33:46,080 SYMMETRY DURING INFUSION, NEXT 825 00:33:46,080 --> 00:33:46,360 SLIDE. 826 00:33:46,360 --> 00:33:48,880 THE MOMS WHO PARTICIPATED IN 827 00:33:48,880 --> 00:33:50,280 THIS ACTIVITY EXPRESSED DESIRE 828 00:33:50,280 --> 00:33:56,400 TO BREAST FEEDING THEIR BABIES, 829 00:33:56,400 --> 00:33:57,840 THERE ARE MANY REASONS TO 830 00:33:57,840 --> 00:34:00,160 CONTINUE PREOF THE FEEDING FOR 831 00:34:00,160 --> 00:34:01,560 THE BOND BETWEEN MOTHER AND BABY 832 00:34:01,560 --> 00:34:02,880 AND HELP BOOST THE IMMUNE 833 00:34:02,880 --> 00:34:04,200 SYSTEM, THE CLINICAL CENTER 834 00:34:04,200 --> 00:34:06,040 HOWEVER HAS LIMITED DOCUMENTS 835 00:34:06,040 --> 00:34:07,600 REGARDING BREAST FEEDING MOMS 836 00:34:07,600 --> 00:34:10,160 AND EXPRESSED BREAST MILK 837 00:34:10,160 --> 00:34:11,920 BECAUSE EXISTING NIH POLICY 838 00:34:11,920 --> 00:34:13,280 NURSING MOTHERS PROGRAM FOCUSES 839 00:34:13,280 --> 00:34:15,920 ON MOTHER'S EXPRESS INDEED 840 00:34:15,920 --> 00:34:19,360 BREAST MILK, LACTATION ROOM AND 841 00:34:19,360 --> 00:34:22,360 SERVICES AVAILABLE. 842 00:34:22,360 --> 00:34:23,080 NEXT SLIDE. 843 00:34:23,080 --> 00:34:25,400 AFTER DISCUSSION WITH THE 844 00:34:25,400 --> 00:34:26,440 LACTATION COORDINATOR THE 845 00:34:26,440 --> 00:34:27,760 VISITING THING MOTHER'S LIST WAS 846 00:34:27,760 --> 00:34:29,440 OBTAINED ALONG WITH A LIST OF 847 00:34:29,440 --> 00:34:30,840 CONTACTS, I WAS ABLE TO SCHEDULE 848 00:34:30,840 --> 00:34:32,000 AN OPPORTUNITY FOR A FEW OF US 849 00:34:32,000 --> 00:34:35,000 TO SEE THE LACTATION NURSE. 850 00:34:35,000 --> 00:34:36,040 SUBSEQUENTLY THE DECISION WAS 851 00:34:36,040 --> 00:34:38,480 MADE TO NOT USE THE LACTATION 852 00:34:38,480 --> 00:34:43,520 ROOM DUE TO LOGISTICS AND 853 00:34:43,520 --> 00:34:45,680 PROXIMITY TO THE NURSING ROOM TO 854 00:34:45,680 --> 00:34:48,400 THE LACTATION AREA. 855 00:34:48,400 --> 00:34:49,000 NEXT SLIDE. 856 00:34:49,000 --> 00:34:50,800 CREATION OF THE BREAST FEEDING 857 00:34:50,800 --> 00:34:53,840 AND DOCUMS OF THE REVIEW OF 858 00:34:53,840 --> 00:34:55,880 LITERALLURE AND BENCHMARKING THE 859 00:34:55,880 --> 00:34:57,880 CDC STORAGE AND PREPARATION OF 860 00:34:57,880 --> 00:34:59,400 BREAST MILK WAS IDENTIFIED IN 861 00:34:59,400 --> 00:35:01,440 SEVERAL HOSPITALS ACROSS THE 862 00:35:01,440 --> 00:35:02,960 COUNTRY SHARED BREAST FEEDING 863 00:35:02,960 --> 00:35:05,080 AND EXPRESSED POLICIES AND 864 00:35:05,080 --> 00:35:05,400 GUIDELINES. 865 00:35:05,400 --> 00:35:08,200 THE IN THIS ROUTINE MEANT TO 866 00:35:08,200 --> 00:35:09,720 REVIEW DOCUMENTS AND PROVIDE 867 00:35:09,720 --> 00:35:10,800 INPUT, FEEDBACK WAS OBTAINED 868 00:35:10,800 --> 00:35:14,920 ALSO FROM THE BEDSIDE NURSES, 869 00:35:14,920 --> 00:35:15,280 NEXT SLIDE. 870 00:35:15,280 --> 00:35:16,600 THE STANDARD OF PRACTICES AND 871 00:35:16,600 --> 00:35:19,280 PROCEDURE WAS ORGANIZED BY THE 872 00:35:19,280 --> 00:35:20,440 FOLLOWING CATEGORIES AND 873 00:35:20,440 --> 00:35:22,800 DEFINITIONS OF TERMS, ESSENTIAL 874 00:35:22,800 --> 00:35:24,720 INFORMATION, COLLECTING BREAST 875 00:35:24,720 --> 00:35:26,720 MILK, STORING EXPRESSED BREAST 876 00:35:26,720 --> 00:35:28,000 MILK, PREPARATION, WARMING 877 00:35:28,000 --> 00:35:30,400 ISSUES ARE, CLEANING SANIFIESING 878 00:35:30,400 --> 00:35:35,720 OF THE SUPPLIES, NEXT SLIDE. 879 00:35:35,720 --> 00:35:38,880 IT TAKE AS I A VILLAGE TO CREATE 880 00:35:38,880 --> 00:35:41,640 A COMP REHAPPENSIVE DOCUMENT, 881 00:35:41,640 --> 00:35:44,800 DISCUSSIONS WITH THE LACTATION 882 00:35:44,800 --> 00:35:46,000 COORDINATOR TO DETERMINE 883 00:35:46,000 --> 00:35:48,240 FEASIBLE OF USING LACTATION ROOM 884 00:35:48,240 --> 00:35:49,240 AS PREVIOUSLY DISCUSSED WAS PART 885 00:35:49,240 --> 00:35:52,720 OF THE PROCESS HOWEVER THIS WAS 886 00:35:52,720 --> 00:35:53,400 NEEDED. 887 00:35:53,400 --> 00:35:54,400 DRAFT DOCUMENTS WAS CIRCUTED FOR 888 00:35:54,400 --> 00:35:55,680 INPUT FROM NURSING AND OTHER 889 00:35:55,680 --> 00:35:57,200 DEPARTMENTS SUCH AS HOSPITAL 890 00:35:57,200 --> 00:36:03,360 EPIDEMIOLOGY FOR INPUT ON 891 00:36:03,360 --> 00:36:05,600 COLLECTION AND THE STORAGE AND 892 00:36:05,600 --> 00:36:07,400 TEMPERATURE MONITORING, ALL 893 00:36:07,400 --> 00:36:08,480 FEEDBACK WAS INCORPORATED IN A 894 00:36:08,480 --> 00:36:11,800 FINAL DRAFT TO THE DOCUMENT WAS 895 00:36:11,800 --> 00:36:15,320 SENT OUT FOR REVIEW IPT GREATER 896 00:36:15,320 --> 00:36:16,120 PUT. 897 00:36:16,120 --> 00:36:16,400 NEXT SLIDE. 898 00:36:16,400 --> 00:36:18,160 THE EXPRESS BREAST MILK 899 00:36:18,160 --> 00:36:19,400 COLLECTION PROCESS INCLUDING 900 00:36:19,400 --> 00:36:20,720 LATE [INDISCERNIBLE] OUTLINED IN 901 00:36:20,720 --> 00:36:25,800 THE DOCUMENT, LABELS WERE 902 00:36:25,800 --> 00:36:26,800 CREATED THATICALLILY IDENTIFIED 903 00:36:26,800 --> 00:36:28,720 THE FRESH NEVER FROZEN 904 00:36:28,720 --> 00:36:31,000 REFRIGERATED FROZEN OR THAT 905 00:36:31,000 --> 00:36:31,360 YOUD. 906 00:36:31,360 --> 00:36:33,000 PRIOR TO ADMISSION, NUTRITION 907 00:36:33,000 --> 00:36:34,200 FOR PRINTED THE LABELS AND 908 00:36:34,200 --> 00:36:36,200 BROUGHT THEM TO THE NURSING 909 00:36:36,200 --> 00:36:36,400 UNIT. 910 00:36:36,400 --> 00:36:40,080 ONCE THE BREAST MILK WAS 911 00:36:40,080 --> 00:36:40,960 EXPRESSED, THE MOTHER FILLED IN 912 00:36:40,960 --> 00:36:42,360 THE INFORMATION ON THE LABEL AND 913 00:36:42,360 --> 00:36:46,120 PLACED THE LABELOT CONTAINER. 914 00:36:46,120 --> 00:36:47,880 THE EXPRESSED BREAST MILK WAS 915 00:36:47,880 --> 00:36:50,200 USED TO USED TO FEED THE INFAPT 916 00:36:50,200 --> 00:36:54,200 OR REFRIGERATED OR FROZEN FOR 917 00:36:54,200 --> 00:36:56,480 LATER USE. 918 00:36:56,480 --> 00:36:56,800 NEXT SLIDE. 919 00:36:56,800 --> 00:36:58,800 ONCE THE BREAST MILK IS 920 00:36:58,800 --> 00:37:00,520 EXPRESSED, IF NOT IMMEDIATELY 921 00:37:00,520 --> 00:37:02,520 USED TO FEED THE INFANT, IT 922 00:37:02,520 --> 00:37:04,200 NEEDS TO BE STORE INDEED A 923 00:37:04,200 --> 00:37:06,960 REFRIGERATOR OR A FREEZER. 924 00:37:06,960 --> 00:37:08,440 THE BIOMED POLICY FOR 925 00:37:08,440 --> 00:37:09,400 REFRIGERATORS AND FREEZERS IN 926 00:37:09,400 --> 00:37:13,000 PATIENT CARE AREA WERE REVIEWED, 927 00:37:13,000 --> 00:37:14,800 A SMALL REFRIGERATOR, WOULD 928 00:37:14,800 --> 00:37:16,320 FREEZER TO PLACE IN THE PATIENT 929 00:37:16,320 --> 00:37:20,640 ROOM AND A LARGER 1 TO PLACE IN 930 00:37:20,640 --> 00:37:21,840 THE LOCKED NUTRITION ROOM 931 00:37:21,840 --> 00:37:23,440 [INDISCERNIBLE] WERE OBTAINED 932 00:37:23,440 --> 00:37:24,840 FROM BIOMED. 933 00:37:24,840 --> 00:37:26,680 EACH REFRIGERATOR FREEZER WAS 934 00:37:26,680 --> 00:37:27,960 LABELED WITH EXPRESSED BREAST 935 00:37:27,960 --> 00:37:31,200 MILK ONLY AS NO OTHER ITEMS CAN 936 00:37:31,200 --> 00:37:34,360 BE PLACED IN THOSE REFRIGERATORS 937 00:37:34,360 --> 00:37:34,800 OR FREEZERS. 938 00:37:34,800 --> 00:37:37,000 EACH WAS EQUIP WIDE A 939 00:37:37,000 --> 00:37:39,320 TEMPERATURE GAUGE AND A LOG WAS 940 00:37:39,320 --> 00:37:41,120 COMPLETED AND MAINTAINED WHEN IT 941 00:37:41,120 --> 00:37:43,520 USE TO DOCUMENT THE TEMPERATURE, 942 00:37:43,520 --> 00:37:45,120 BIOMED WAS NOTIFIED FOR ANY 943 00:37:45,120 --> 00:37:48,120 TEMPERATURES OUTSIDE THE 944 00:37:48,120 --> 00:37:48,760 ACCEPTABLE RANGE. 945 00:37:48,760 --> 00:37:53,440 FOR THIS STUDY, THE EXPRESSED 946 00:37:53,440 --> 00:37:54,880 BREAST MILK WAS STORED IN THE 947 00:37:54,880 --> 00:37:55,240 PATIENT'S ROOM. 948 00:37:55,240 --> 00:37:57,200 IF IT WERE TO HAVE BEEN FROADZEN 949 00:37:57,200 --> 00:37:58,600 IT WOULD HAVE BEEN STORE INDEED 950 00:37:58,600 --> 00:38:02,160 A LARGER REFREJERATOR, FREEZER 951 00:38:02,160 --> 00:38:03,640 DOWN IN THE NUTRITION ROOM SINCE 952 00:38:03,640 --> 00:38:05,800 IT IS EASIER TO MAINTAIN 953 00:38:05,800 --> 00:38:08,800 CONSISTENT TEMPERATURES IN IN 954 00:38:08,800 --> 00:38:10,040 FREEZER COMPARTMENT. 955 00:38:10,040 --> 00:38:14,280 THE CHILDREN CHILDREN'S INNFERS 956 00:38:14,280 --> 00:38:16,080 ALSO CONTACTED TO SET UP TO SET 957 00:38:16,080 --> 00:38:18,200 UP PROCESSES FOR WHEN THE WOMEN 958 00:38:18,200 --> 00:38:18,600 WERE DISCHARGED. 959 00:38:18,600 --> 00:38:21,480 STUDIES AND RESOURCES WERE 960 00:38:21,480 --> 00:38:27,400 PROVIDED TO THEM. 961 00:38:27,400 --> 00:38:27,800 NEXT SLIDE, PLEASE. 962 00:38:27,800 --> 00:38:28,720 A DESIGNATED AREA FOR THE 963 00:38:28,720 --> 00:38:31,120 PATIENT ROOM WAS ESTABLISHED FOR 964 00:38:31,120 --> 00:38:32,560 CLEAN BREAST MILK SAVING AND 965 00:38:32,560 --> 00:38:35,400 SUPPLIES AND STORING THE CLEAN 966 00:38:35,400 --> 00:38:35,720 SURVEYS LIES. 967 00:38:35,720 --> 00:38:36,440 THE CLEANING PROCEDURE WAS 968 00:38:36,440 --> 00:38:38,520 OUTLINED IN THE DOCUMENT 969 00:38:38,520 --> 00:38:40,480 REQUESTMENT, A MICROSTEAM BAG 970 00:38:40,480 --> 00:38:42,600 WAS USED TO SANITIZE THE 971 00:38:42,600 --> 00:38:43,800 SUPPLIES, IN THE DESIGNATED 972 00:38:43,800 --> 00:38:45,520 HITTER MICROWAVE LOCATED IN THE 973 00:38:45,520 --> 00:38:47,640 NUTRITION ROOM ON THE PEDIATRIC 974 00:38:47,640 --> 00:39:06,120 NURSING UNIT. 975 00:39:06,120 --> 00:39:07,120 NEXT SLIDE. 976 00:39:07,120 --> 00:39:09,600 THE DOCUMENTS CREATED WERE ADDED 977 00:39:09,600 --> 00:39:11,560 TO THE RESOURCE MANUELSA 1 978 00:39:11,560 --> 00:39:12,600 MOTHER WEST, DAY HOSPITAL AND 979 00:39:12,600 --> 00:39:16,960 ALSO IN THE ICU. 980 00:39:16,960 --> 00:39:17,240 NEXT SLIDE. 981 00:39:17,240 --> 00:39:18,800 WE WANTED TO TAKE THIS 982 00:39:18,800 --> 00:39:20,520 OPPORTUNITY TO THANK THE BEDSIDE 983 00:39:20,520 --> 00:39:22,240 NURSES AND PC Ts WHO 984 00:39:22,240 --> 00:39:24,680 CONTRIBUTED TO THE SUCCESS AND 985 00:39:24,680 --> 00:39:26,200 IMPLEMENTING THIS STUDY IN SO 986 00:39:26,200 --> 00:39:26,560 MANY WAYS. 987 00:39:26,560 --> 00:39:28,480 THOSE WHO CARED FOR THE INFANTS 988 00:39:28,480 --> 00:39:30,040 AND THEIR CAREGIVERS, THOSE WHO 989 00:39:30,040 --> 00:39:31,560 ASSISTED IN INSURING THE 990 00:39:31,560 --> 00:39:34,120 INTEGRITY OF THE RESEARCH STUDY 991 00:39:34,120 --> 00:39:36,960 AND PROVISION OF SAFE CARE FOR 992 00:39:36,960 --> 00:39:38,400 THE WILLINGNESS EMBRAISE THE NEW 993 00:39:38,400 --> 00:39:40,200 SKILLS FOR SHARING THEIR 994 00:39:40,200 --> 00:39:41,600 EXPERIENCE AND PROVIDING 995 00:39:41,600 --> 00:39:43,360 FEEDBACK THAT ASSISTED US TO 996 00:39:43,360 --> 00:39:45,560 REFINE THE PLANS AND MAKE 997 00:39:45,560 --> 00:39:46,800 IMPROVEMENTS FOR THEIR 998 00:39:46,800 --> 00:39:47,920 COLLABORATION IN REVIEWING THE 999 00:39:47,920 --> 00:39:51,440 VARIOUS DOCUMENTS THAT WERE 1000 00:39:51,440 --> 00:39:52,720 DEVELOPED IN PROVIDING FEEDBACK 1001 00:39:52,720 --> 00:39:54,880 TO IMPROVE THE RESOURCES. 1002 00:39:54,880 --> 00:39:55,440 NEXT SLIDE. 1003 00:39:55,440 --> 00:39:57,400 AS YOU WOULD HAVE HEARD 1004 00:39:57,400 --> 00:39:58,120 THROUGHOUT THIS PRESENTATION, 1005 00:39:58,120 --> 00:40:08,400 THERE WERE PROCESSES THAT HAD TO 1006 00:40:08,400 --> 00:40:11,000 BE QUEPED INCLUDING THE FAMILY 1007 00:40:11,000 --> 00:40:13,560 RESEARCH TEAM, THE TEAM, MEMBERS 1008 00:40:13,560 --> 00:40:16,320 AND THE NURSES AND PC Ts WITH 1009 00:40:16,320 --> 00:40:20,440 1 NORTHWEST DAY HOSPITAL, ICU, 1010 00:40:20,440 --> 00:40:22,000 THE PEDIATRIC CLINIC, THESE BY 1011 00:40:22,000 --> 00:40:23,760 NO MEANS REPRESENT ALL OF THE 1012 00:40:23,760 --> 00:40:24,920 STAFF WHO ASSISTED US WITH THIS 1013 00:40:24,920 --> 00:40:27,160 STUDY, NOW I WILL TURN IT OVER 1014 00:40:27,160 --> 00:40:32,120 TO PRESILLA TO PROVIDE AN UPDATE 1015 00:40:32,120 --> 00:40:32,480 ON THE INFANTS. 1016 00:40:32,480 --> 00:40:32,840 >> THANK YOU. 1017 00:40:32,840 --> 00:40:34,760 AS YOU HEARD FROM OUR SPEAKERS, 1018 00:40:34,760 --> 00:40:37,760 WE HAVE TREATED 2 INFANTS AT THE 1019 00:40:37,760 --> 00:40:39,400 CLINICAL CENTER SO FAR, THIS IS 1020 00:40:39,400 --> 00:40:43,280 A FIRST INFANT WHO CAME TO US AT 1021 00:40:43,280 --> 00:40:46,080 8 MONTHS OF AGE AND WAS TREATED 1022 00:40:46,080 --> 00:40:48,400 AT 9 MONTHS. 1023 00:40:48,400 --> 00:40:50,360 UNFORTUNATELY SEE SUCCUMBED TO 1024 00:40:50,360 --> 00:40:52,120 HER DISEASE AT 17 MONTHS, 8 1025 00:40:52,120 --> 00:40:57,520 MONTHS AFTER GENE TRANSFER. 1026 00:40:57,520 --> 00:40:58,320 NEXT SLIDE, PLEASE. 1027 00:40:58,320 --> 00:41:00,200 HERE WE SHOW THE VARIOUS 1028 00:41:00,200 --> 00:41:01,360 PICTURES OF THE SECOND INFANT 1029 00:41:01,360 --> 00:41:02,080 DIAGNOSED AFFAIRS TEAM LEADER 4 1030 00:41:02,080 --> 00:41:03,680 MONTHS OF AGE AND JOINING OUR 1031 00:41:03,680 --> 00:41:06,880 PROTOCOL AT 6 MONTHS AND TREATED 1032 00:41:06,880 --> 00:41:08,640 AT 7 MONTHS NOW SHE'S 15 MONTHS 1033 00:41:08,640 --> 00:41:11,040 OLD, SO FAR SHE'S MAKING SLOW 1034 00:41:11,040 --> 00:41:14,440 PROGRESS AS SHOWN LEER, NOW I 1035 00:41:14,440 --> 00:41:20,240 WILL TALK ABOUT THE FUTURE 1036 00:41:20,240 --> 00:41:21,000 IMPLICATIONS. 1037 00:41:21,000 --> 00:41:21,400 NTHANK YOU PRESILLA. 1038 00:41:21,400 --> 00:41:22,680 WE DISCOVERED THAT THE METHODS 1039 00:41:22,680 --> 00:41:26,840 OF EICATION, TRAINING AND COMP 1040 00:41:26,840 --> 00:41:28,600 TEBSY DEVELOPED FOR THIS 1041 00:41:28,600 --> 00:41:30,600 PROTOCOL, AND WE HAVE SINCE HAD 1042 00:41:30,600 --> 00:41:31,680 THAT OPPORTUNITY TO USE THIS 1043 00:41:31,680 --> 00:41:34,360 PROCESS FOR OTHER STUDIES, THIS 1044 00:41:34,360 --> 00:41:35,040 ENDEAVOR DEMONSTRATED THE 1045 00:41:35,040 --> 00:41:36,440 IMPORTANCE OF CLOSE MONITORING 1046 00:41:36,440 --> 00:41:38,000 OF TRAINING PLANTS AND SAFETY 1047 00:41:38,000 --> 00:41:39,960 AND BEST PRACTICES IN BLOOD 1048 00:41:39,960 --> 00:41:42,480 COLLECTION AT PRESENT, OUR IT 1049 00:41:42,480 --> 00:41:43,880 COLLEAGUES ARE PILOTING AN 1050 00:41:43,880 --> 00:41:48,600 ENHANCEMENT OF THE BLOOD TRACKER 1051 00:41:48,600 --> 00:41:51,960 TOOL FOR THE L. O. P. WHERE THEY 1052 00:41:51,960 --> 00:41:53,000 CAN REVIEW THE AMOUNTS OF BLOOD 1053 00:41:53,000 --> 00:41:55,360 AND HAVE THE OUTPATIENT SETTING 1054 00:41:55,360 --> 00:41:56,640 MODIFY LAB ORDERS TO STAY WITHIN 1055 00:41:56,640 --> 00:41:58,480 PATIENT AND SAFETY GUIDELINES, 1056 00:41:58,480 --> 00:42:00,640 IN AUGUST OF 2021, THE PEDIATRIC 1057 00:42:00,640 --> 00:42:02,960 PLANNING GROUP WAS ESTABLISHED 1058 00:42:02,960 --> 00:42:05,000 WITH THE GOALS OF OF 1 1059 00:42:05,000 --> 00:42:06,840 EVALUATING PEDIATRIC CARE AT THE 1060 00:42:06,840 --> 00:42:09,080 NIH CLINICAL CENTER AND 2, 1061 00:42:09,080 --> 00:42:11,240 CONDUCTING AN ASSESSMENT OF THE 1062 00:42:11,240 --> 00:42:13,120 FEASIBILITY OF EXPANDING PATIENT 1063 00:42:13,120 --> 00:42:15,280 VOLUME INCREASING THE ABILITY TO 1064 00:42:15,280 --> 00:42:16,400 MANAGE HIGHER ACUITY PATIENTS 1065 00:42:16,400 --> 00:42:18,880 AND REDUCING THE LOWER LIMIT FOR 1066 00:42:18,880 --> 00:42:21,520 ADMISSIONS FROM 3 YEARS TO 6 1067 00:42:21,520 --> 00:42:22,360 MONTHS. 1068 00:42:22,360 --> 00:42:23,960 SUBGROUPS WERE CREATED AND 1069 00:42:23,960 --> 00:42:26,200 DIVIDED AND PROVIDED DETAILS 1070 00:42:26,200 --> 00:42:29,840 RECOMMENDATIONS IN 3 AREAS. 1071 00:42:29,840 --> 00:42:31,360 PEDIATRIC EMERGENCY MANAGEMENT, 1072 00:42:31,360 --> 00:42:33,600 PEDIATRIC CRITICAL CARE AND 1073 00:42:33,600 --> 00:42:34,840 PEDIATRIC SUBSPECIALTY COVERAGE. 1074 00:42:34,840 --> 00:42:38,080 A PROPOSAL WITH THE DETAILED 1075 00:42:38,080 --> 00:42:38,720 RECOMMENDATIONS HAVE BEEN 1076 00:42:38,720 --> 00:42:40,680 SUBMITTED TO THE NIESH H 1077 00:42:40,680 --> 00:42:41,120 GOVERNING BOARD. 1078 00:42:41,120 --> 00:42:42,680 ALL OF THIS WOULD NOT HAVE COME 1079 00:42:42,680 --> 00:42:44,400 TO FRUITION WITHOUT THE 1080 00:42:44,400 --> 00:42:45,960 INVOLVEMENT OF SO MANY. 1081 00:42:45,960 --> 00:42:47,240 WE WANT THIS PRESENTATION TO 1082 00:42:47,240 --> 00:42:49,360 SERVE AS AN ACKNOWLEDGMENT TO 1083 00:42:49,360 --> 00:42:50,280 EVERYONE'S EFFORTS. 1084 00:42:50,280 --> 00:42:51,880 AS CLINICIANS WE SHOULD BE 1085 00:42:51,880 --> 00:42:53,320 PROUD, THIS STUDY SERVED AS A 1086 00:42:53,320 --> 00:42:56,760 REMINDER THAT THERE CAN BE HOPE 1087 00:42:56,760 --> 00:42:58,200 FOR FAMILIES AND WHY WE DO THE 1088 00:42:58,200 --> 00:43:01,240 IMPORTANT WORK THAT WE DO AND 1089 00:43:01,240 --> 00:43:04,960 NOW I WILL TURN IT OVER TO 1090 00:43:04,960 --> 00:43:07,520 DR. JORDAN FOR CLOSING REMARKS. 1091 00:43:07,520 --> 00:43:09,200 >> THANK YOU TRISH AND THANK YOU 1092 00:43:09,200 --> 00:43:11,800 TO ALL OF OUR PRESENTERS. 1093 00:43:11,800 --> 00:43:20,120 I THINK THIS HAS BEEN A FABULOUS 1094 00:43:20,120 --> 00:43:21,720 EXHIBITION OF HOW TEAMS COME 1095 00:43:21,720 --> 00:43:23,200 TOGETHER TO PLAN FOR SOMETHING 1096 00:43:23,200 --> 00:43:24,800 COMPLEX AND SOMETHING THAT HAD 1097 00:43:24,800 --> 00:43:26,800 NOT BEEN DONE IN RECENT YEARS, 1098 00:43:26,800 --> 00:43:29,360 AT THE CLINICAL CENTER. 1099 00:43:29,360 --> 00:43:32,080 I HAVE NOT RECEIVED ANY 1100 00:43:32,080 --> 00:43:32,360 QUESTIONS. 1101 00:43:32,360 --> 00:43:34,000 I WOULD LIKE TO REMIND THE 1102 00:43:34,000 --> 00:43:35,920 AUDIENCE IF HAVE YOU QUESTIONS 1103 00:43:35,920 --> 00:43:38,160 ENTER IT VIA CLICKING THE BUTTON 1104 00:43:38,160 --> 00:43:44,960 THERE, BUT I WOULD LIKE TO ASK 1105 00:43:44,960 --> 00:43:46,680 THE PRESENTERS YOU KNOW WHAT WAS 1106 00:43:46,680 --> 00:43:51,560 MOST CHALLENGINGLY FOR YOU IN 1107 00:43:51,560 --> 00:43:54,120 DEVELOPING THE EDUCATION AND THE 1108 00:43:54,120 --> 00:43:58,200 PLAN FOR THE PATIENTS? 1109 00:43:58,200 --> 00:43:59,760 SO PERHAPS WE COULD START OR GO 1110 00:43:59,760 --> 00:44:04,720 IN ORDER AS FAR AS CHALLENGE 1111 00:44:04,720 --> 00:44:05,320 WITH DR. D'SOUZA. 1112 00:44:05,320 --> 00:44:16,520 WHAT DID YOU FIND MOST 1113 00:44:16,520 --> 00:44:16,840 CHALLENGING? 1114 00:44:16,840 --> 00:44:19,800 >> IT'S A VERY GOOD QUESTION. 1115 00:44:19,800 --> 00:44:21,440 IT HAS BEEN--BRINGING INFABTS TO 1116 00:44:21,440 --> 00:44:23,320 THEIN KLF-TWOICAL CENTER WAS A 1117 00:44:23,320 --> 00:44:27,000 PRETTY HARD THING. 1118 00:44:27,000 --> 00:44:28,600 YOU KNOW YOU KNOW FOR ME, IT WAS 1119 00:44:28,600 --> 00:44:31,160 DEALING WITH THE FAMILY, DEALING 1120 00:44:31,160 --> 00:44:37,840 WITH THE SYSTEM, DEALING WITH 1121 00:44:37,840 --> 00:44:39,440 THE WHOLE MULTIINSTITUTIONS 1122 00:44:39,440 --> 00:44:42,560 BEING THE PRIMARY PROVIDER AND 1123 00:44:42,560 --> 00:44:43,600 DR. CYNTHIA [INDISCERNIBLE] AS A 1124 00:44:43,600 --> 00:44:47,120 TEAM, YOU KNOW COORDINATING WITH 1125 00:44:47,120 --> 00:44:49,840 THE MULTIPLE PEOPLE, 1126 00:44:49,840 --> 00:44:50,160 DEPARTMENTS. 1127 00:44:50,160 --> 00:44:51,960 I THOUGHT THAT WAS A HARD THING 1128 00:44:51,960 --> 00:44:54,280 FOR THESE 2 INFANTS. 1129 00:44:54,280 --> 00:44:57,240 ULTIMATELY WE HAD A GOOD 1130 00:44:57,240 --> 00:44:59,080 COOPERATION FROM ALL--THROUGHOUT 1131 00:44:59,080 --> 00:45:01,640 THE HOSPITAL, WHEREVER WE WENT, 1132 00:45:01,640 --> 00:45:07,040 YOU KNOW, THE--ESPENLLY THE--THE 1133 00:45:07,040 --> 00:45:09,240 NURSES, THE TECHNOLOGIST, THE 1134 00:45:09,240 --> 00:45:11,840 ANESTHESIA TEAM, WHO ARE 1135 00:45:11,840 --> 00:45:14,120 AVAILABLE ON INFANT EVENT, THEY 1136 00:45:14,120 --> 00:45:16,800 TOOK WELL CARE OF OUR INFANT AND 1137 00:45:16,800 --> 00:45:19,960 PROVIDED NECESSARY INFORMATION 1138 00:45:19,960 --> 00:45:24,040 FOR OUR PROTOCOL. 1139 00:45:24,040 --> 00:45:27,560 >> THANK YOU. 1140 00:45:27,560 --> 00:45:28,840 >> KRISTA WOULD YOU LIKE TO ADD 1141 00:45:28,840 --> 00:45:30,000 COMMENTS TO THAT OR OTHER 1142 00:45:30,000 --> 00:45:34,760 THOUGHTS THAT YOU EXPERIENCED? 1143 00:45:34,760 --> 00:45:36,880 >> YEAH, 1 OF THE GREATEST 1144 00:45:36,880 --> 00:45:38,520 CHALLENGES IT BRIDGING GAPS WAS 1145 00:45:38,520 --> 00:45:40,720 RECOGNIZING THE INDIVIDUAL 1146 00:45:40,720 --> 00:45:41,960 EXPERTISE WITHIN THE NURSING 1147 00:45:41,960 --> 00:45:45,480 DEPARTMENT AS WELL AS THE 1148 00:45:45,480 --> 00:45:45,920 VARIOUS DEPARTMENTS. 1149 00:45:45,920 --> 00:45:47,360 I THINK INSURING THAT WE 1150 00:45:47,360 --> 00:45:48,560 LISTENED TO THIS THE 1151 00:45:48,560 --> 00:45:50,400 STAKEHOLDERS AND EVERYBODY THAT 1152 00:45:50,400 --> 00:45:51,520 WOULD BE PROVIDING CARE AND 1153 00:45:51,520 --> 00:45:53,800 WOULD BE INVOLVED IN THE CARE 1154 00:45:53,800 --> 00:45:56,080 TRULY WAS PARAMOUNT TO MAKING 1155 00:45:56,080 --> 00:46:00,240 SURE THAT WE BRIDGE THE GAPS 1156 00:46:00,240 --> 00:46:02,760 THAT EXISTED, AND WE MET WEEKLY 1157 00:46:02,760 --> 00:46:04,000 FOR THOSE FMEAs ARE 1158 00:46:04,000 --> 00:46:06,000 APPROXIMATE MONTHS AND MONTHS 1159 00:46:06,000 --> 00:46:08,760 AND 50 PLUS + PEOPLE THERE AND I 1160 00:46:08,760 --> 00:46:11,800 THINK THAT THAT WAS INCREDIBLY 1161 00:46:11,800 --> 00:46:13,440 IMPORTANT AS WELL AZIZZ WELL AS 1162 00:46:13,440 --> 00:46:14,920 SURVEYS THAT CONDUCTED FOR 1163 00:46:14,920 --> 00:46:16,440 EDUCATION TO MAKE SURE THOSE 1164 00:46:16,440 --> 00:46:20,000 VOICES WERE HEARD AND EVERYBODY 1165 00:46:20,000 --> 00:46:20,800 WAS REPRESENTED. 1166 00:46:20,800 --> 00:46:22,280 THAT WAS PROBABLY THE HARDEST 1167 00:46:22,280 --> 00:46:27,800 PART WAS JUST MAKING SURE THAT 1168 00:46:27,800 --> 00:46:29,640 DIDN'T LEAVE ANY STONE UNTURNED 1169 00:46:29,640 --> 00:46:30,960 AND EVERYBODY HAD A VOICE TO 1170 00:46:30,960 --> 00:46:34,120 MAKE SURE THAT THEIR CONCERNS 1171 00:46:34,120 --> 00:46:35,280 AND IDEAS WERE BROUGHT FORWARD 1172 00:46:35,280 --> 00:46:36,800 AND IT REALLY DID TAKE A 1173 00:46:36,800 --> 00:46:38,800 VILLAGE, IT WAS AN INCREDIBLE 1174 00:46:38,800 --> 00:46:41,360 HONOR TO WORK WITH SUCH AN 1175 00:46:41,360 --> 00:46:42,000 AMAZING TEAM. 1176 00:46:42,000 --> 00:46:45,000 >> SO I WOULD LIKE TO TURN FROM 1177 00:46:45,000 --> 00:46:46,840 CHALLENGES TO WHAT DO YOU SEE AS 1178 00:46:46,840 --> 00:46:50,560 SOME OF THE GREATEST SUCCESSES 1179 00:46:50,560 --> 00:46:52,800 FROM THIS WORK? 1180 00:46:52,800 --> 00:46:56,440 I WILL ASK ROSA TO COMMENT. 1181 00:46:56,440 --> 00:46:57,880 >> THANK YOU DR. JORDAN. 1182 00:46:57,880 --> 00:47:03,080 I THINK THE GREATEST SUCCESS AS 1183 00:47:03,080 --> 00:47:04,280 MENTIONED IN CLOSING IS WE WERE 1184 00:47:04,280 --> 00:47:06,400 ABLE TO REPLICATE IT, AND WE CAN 1185 00:47:06,400 --> 00:47:08,200 CONTINUE TO REPLICATE IT IN 1186 00:47:08,200 --> 00:47:09,200 DIFFERENT SETTINGS, WE'RE 1187 00:47:09,200 --> 00:47:10,080 ALREADY WORKING ON DIFFERENTS 1188 00:47:10,080 --> 00:47:12,400 SPECTS TO JUST USE THE SAME TIME 1189 00:47:12,400 --> 00:47:14,400 OF EDUCATION AND TRAINING WITH 1190 00:47:14,400 --> 00:47:15,800 SIMULATION, TO INTRODUCE AND 1191 00:47:15,800 --> 00:47:21,920 PREPARE NURSES FOR NEW CLINICAL 1192 00:47:21,920 --> 00:47:22,200 TRIALS. 1193 00:47:22,200 --> 00:47:22,800 >> THANK YOU. 1194 00:47:22,800 --> 00:47:25,800 TRISH, DO YOU WANT TO COMMENT 1195 00:47:25,800 --> 00:47:26,200 FURTHER? 1196 00:47:26,200 --> 00:47:27,720 >> SURE, THANK YOU. 1197 00:47:27,720 --> 00:47:29,600 I THINK THE--1 OF THE GREATEST 1198 00:47:29,600 --> 00:47:31,000 THING SYSTEM TO--YOU KNOW ALL 1199 00:47:31,000 --> 00:47:32,680 THE TEAMS WE WORK WITH, ALL THE 1200 00:47:32,680 --> 00:47:34,440 GROUPS WE WELCOMER WITH, REALLY 1201 00:47:34,440 --> 00:47:36,320 WANTED WHAT WAS BEST FOR THESE 1202 00:47:36,320 --> 00:47:37,960 CHILDREN AND WERE WILLING TO DO 1203 00:47:37,960 --> 00:47:39,880 WHAT WAS NEEDED TO MAKE SURE 1204 00:47:39,880 --> 00:47:41,560 THAT THEY WERE SAFE AND THAT WE 1205 00:47:41,560 --> 00:47:43,640 WERE ABLE TO CARRY OUT THIS 1206 00:47:43,640 --> 00:47:44,200 PROTOCOL. 1207 00:47:44,200 --> 00:47:46,000 IN THE EDUCATION IN AND THE 1208 00:47:46,000 --> 00:47:50,560 TRAINING FROM THE IT FOLKS, FROM 1209 00:47:50,560 --> 00:47:53,160 JUST EVERY AS SPECT, OUR NURSES, 1210 00:47:53,160 --> 00:47:54,680 OUR ICU NURSES WHO HAD TO REALLY 1211 00:47:54,680 --> 00:47:55,880 GO OUT OF THEIR SCOPE OF 1212 00:47:55,880 --> 00:47:57,720 PRACTICE AND TAKE ON SOMETHING 1213 00:47:57,720 --> 00:48:00,680 SO NEW AND CHALLENGING. 1214 00:48:00,680 --> 00:48:02,880 IT JUST--IT WAS FUN TO JUST WORK 1215 00:48:02,880 --> 00:48:06,800 WITH THESE FOLKS AND IT WAS EASY 1216 00:48:06,800 --> 00:48:07,880 IN THAT SENSE BECAUSE EVERYBODY 1217 00:48:07,880 --> 00:48:11,440 WANTED TO THE SAME OUTCOME. 1218 00:48:11,440 --> 00:48:11,920 >> THANK YOU. 1219 00:48:11,920 --> 00:48:15,840 I RECALL THE DAY WHEN THE 1 1220 00:48:15,840 --> 00:48:17,760 CHILD DID HAVE THE ANAFLACTIC 1221 00:48:17,760 --> 00:48:20,440 REACTION AND GOING TO THE ICU 1222 00:48:20,440 --> 00:48:22,120 AND 1 MIGHT EXPECT AN AIR OF 1223 00:48:22,120 --> 00:48:24,760 FRENZ SKPE BAKUGAN IT WAS CALM, 1224 00:48:24,760 --> 00:48:27,800 CONTROLLED AND EVERYONE WAS 1225 00:48:27,800 --> 00:48:29,200 COMFORTABLE, THEY KNEW WHAT TO 1226 00:48:29,200 --> 00:48:30,640 DO AND THINGS WENT VERY WELL AND 1227 00:48:30,640 --> 00:48:31,960 WE HAD A GOOD OUTCOME AND I 1228 00:48:31,960 --> 00:48:36,040 THINK THE TRAINING AND EDUCATION 1229 00:48:36,040 --> 00:48:39,040 THAT WAS PROVIDED AND ESPECIALLY 1230 00:48:39,040 --> 00:48:41,160 THE SIMULATION, YOU KNOW REALLY 1231 00:48:41,160 --> 00:48:41,600 PREPARED PEOPLE. 1232 00:48:41,600 --> 00:48:46,200 I WOULD ALSO LIKE TO COMMENT AND 1233 00:48:46,200 --> 00:48:48,440 PERHAPS HERE FURTHER FROM MYRA 1234 00:48:48,440 --> 00:48:50,200 REGARDING ALL THE DETAIL 1235 00:48:50,200 --> 00:48:51,760 PROVIDED WHILE PREPARING FOR 1236 00:48:51,760 --> 00:48:53,000 BREAST FEEDING, 1 WOULD THINK WE 1237 00:48:53,000 --> 00:48:55,000 ARE A HOSPITAL, WE SHOULD HAVE 1238 00:48:55,000 --> 00:48:56,400 THESE KINDS OF THINGS IN PLACE 1239 00:48:56,400 --> 00:49:00,480 AND READY AND YET, WE DID NOT 1240 00:49:00,480 --> 00:49:02,000 SO, WHAT DID YOU FIND, AGAIN, 1241 00:49:02,000 --> 00:49:06,440 SOME OF YOU ARE EXPERIENCING IN 1242 00:49:06,440 --> 00:49:07,600 CREATING THIS PROTOCOL AND IS 1243 00:49:07,600 --> 00:49:13,840 THIS SOMETHING NOW THAT WE CAN 1244 00:49:13,840 --> 00:49:15,000 USE MOVING FORWARD? 1245 00:49:15,000 --> 00:49:16,200 >> WELL, DR. JORDAN, THAT IS A 1246 00:49:16,200 --> 00:49:18,480 GREAT QUESTION, I HAVE TO GIVE 1247 00:49:18,480 --> 00:49:19,640 KUDOS TO SO MANY DIFFERENT 1248 00:49:19,640 --> 00:49:20,760 DEPARTMENTS AND SO MANY PEOPLE 1249 00:49:20,760 --> 00:49:22,440 ACROSS THE COUNTRY THAT HELPED 1250 00:49:22,440 --> 00:49:23,680 US OUT. 1251 00:49:23,680 --> 00:49:24,720 THIS--YOU WOULD THINK LIKE YOU 1252 00:49:24,720 --> 00:49:27,280 SAID, WE ARE A HOSPITAL BUT WE 1253 00:49:27,280 --> 00:49:28,920 HAVEN'T HAD INFANTS FOR A LONG 1254 00:49:28,920 --> 00:49:31,000 PERIOD OF TIME SO JUST BEING 1255 00:49:31,000 --> 00:49:32,560 PREPARED IF ARE THAT PART OF IT, 1256 00:49:32,560 --> 00:49:36,280 BUT I CAN'T SAY ENOUGH ABOUT THE 1257 00:49:36,280 --> 00:49:38,360 NUTRITION DEPARTMENT WHO MANY 1258 00:49:38,360 --> 00:49:40,600 DIFFERENT PLAYERS ALONG THE WAY 1259 00:49:40,600 --> 00:49:42,200 HELPED IN IDENTIFYING VARIOUS 1260 00:49:42,200 --> 00:49:46,320 ASPECTS, YOU KNOW THROUGHOUT 1261 00:49:46,320 --> 00:49:48,120 THAT PARTICULAR PROCESS BIOMED 1262 00:49:48,120 --> 00:49:50,120 WHO WEIGHED INOT REFRIGERATORS 1263 00:49:50,120 --> 00:49:50,960 AND TEMPERATURES, HOSPITAL 1264 00:49:50,960 --> 00:49:52,440 EPIDEMIOLOGY WHO GAVE ENORMOUS 1265 00:49:52,440 --> 00:49:54,560 IMPACTS TO MAKE SURE THAT WE 1266 00:49:54,560 --> 00:49:56,600 WERE ADHERING TO THE BEST SAFE 1267 00:49:56,600 --> 00:49:57,920 GUIDELINES TO MAKE SURE WE 1268 00:49:57,920 --> 00:50:00,120 DIDN'T HAVE ANY TRANSMISSION OF 1269 00:50:00,120 --> 00:50:01,720 INFECTIOUS ACCIDENTALLY OR 1270 00:50:01,720 --> 00:50:03,680 LOOKING AT THE ENVIRONMENT FROM 1271 00:50:03,680 --> 00:50:06,640 THAT STANDPOINT, LIKE I SAID, MY 1272 00:50:06,640 --> 00:50:08,360 COLLEAGUES, YOU KNOW THROUGH THE 1273 00:50:08,360 --> 00:50:10,640 ASSOCIATION OF FUTURE 1274 00:50:10,640 --> 00:50:11,160 [INDISCERNIBLE] AT 1275 00:50:11,160 --> 00:50:11,720 [INDISCERNIBLE] ACROSS THE 1276 00:50:11,720 --> 00:50:13,120 NATION WHO SHARED WHEN I REACHED 1277 00:50:13,120 --> 00:50:15,040 OUT TO THEM AND EXPRESS WHAT WAS 1278 00:50:15,040 --> 00:50:18,560 GOING ON, THEY SHARED THEIR 1279 00:50:18,560 --> 00:50:19,600 BREAST MILK VARIOUS POLICIES AND 1280 00:50:19,600 --> 00:50:21,280 GUIDELINES THAT HELP ME TO 1281 00:50:21,280 --> 00:50:22,280 FURTHER FINE TUNE WHAT WOULD 1282 00:50:22,280 --> 00:50:26,200 WORK HERE IN THE CLINICAL CENTER 1283 00:50:26,200 --> 00:50:28,280 VURSS NOT A LACTATION 1284 00:50:28,280 --> 00:50:29,440 COORDINATOR WHO PROVIDED A LOT 1285 00:50:29,440 --> 00:50:30,400 OF INFORMATION ALTHOUGH WE 1286 00:50:30,400 --> 00:50:32,040 DIDN'T END UP USING THAT, THAT 1287 00:50:32,040 --> 00:50:33,240 WOULD BE BENEFICIAL BECAUSE I 1288 00:50:33,240 --> 00:50:34,800 ADDED THAT TO THE DOCUMENT THAT 1289 00:50:34,800 --> 00:50:36,400 IS NOW VERY PROBUST, THE NEXT 1290 00:50:36,400 --> 00:50:38,800 STEP WILL BE TO MOVE THIS INTO A 1291 00:50:38,800 --> 00:50:39,600 CLINICAL CENTER DOCUMENT, THIS 1292 00:50:39,600 --> 00:50:41,800 IS AVAILABLE NOT ONLY FOR THESE 1293 00:50:41,800 --> 00:50:43,560 MOTHERS, ANY OF OUR MOTHERS THAT 1294 00:50:43,560 --> 00:50:45,320 COME TO THE PEDIATRIC AREA, BUT 1295 00:50:45,320 --> 00:50:46,520 IF THERE'S OTHERS ALSO WITHIN 1296 00:50:46,520 --> 00:50:49,600 THE CLINICAL CENTER THAT NEED TO 1297 00:50:49,600 --> 00:50:51,360 EXPRESS EXPRESS BREAST MILK ON 1298 00:50:51,360 --> 00:50:52,400 OTHER STUDIES WHERE THAT'S SAFE 1299 00:50:52,400 --> 00:50:54,600 FOR THEM TO DO THAT AND STORE 1300 00:50:54,600 --> 00:50:57,520 THAT FOR FUTURE USE, IT WILL BE 1301 00:50:57,520 --> 00:50:59,200 INPUTTING THAT AS WELL. 1302 00:50:59,200 --> 00:50:59,760 >> THANK YOU. 1303 00:50:59,760 --> 00:51:04,080 SO WE DID RECEIVE A COMMENT AND 1304 00:51:04,080 --> 00:51:04,600 QUESTION. 1305 00:51:04,600 --> 00:51:05,720 CONGRATULATIONS FOR THIS 1306 00:51:05,720 --> 00:51:08,560 PIONEERING WORK, TO ALL THE 1307 00:51:08,560 --> 00:51:09,400 TEAMS INVOLVED, VERY APPROPRIATE 1308 00:51:09,400 --> 00:51:13,280 CHOICE OF TOPIC FOR NURSING WEEK 1309 00:51:13,280 --> 00:51:13,600 CELEBRATION. 1310 00:51:13,600 --> 00:51:16,400 THANK YOU. 1311 00:51:16,400 --> 00:51:18,200 AND THE QUESTIONER ASKS, CAN YOU 1312 00:51:18,200 --> 00:51:21,080 COMMENT ON OUR LAB'S ABILITY TO 1313 00:51:21,080 --> 00:51:22,960 RUN LABS ON PEDIATRIC VOLUME 1314 00:51:22,960 --> 00:51:36,080 TUBES OR WAS TESTING DONE AT 1315 00:51:36,080 --> 00:51:36,680 CHILDREN'S NATIONAL. 1316 00:51:36,680 --> 00:51:39,320 >> SO I KNOW PRESILLA CAN ADD TO 1317 00:51:39,320 --> 00:51:40,560 THIS BETTER THAN I, WHEN WE WORK 1318 00:51:40,560 --> 00:51:42,080 TOGETHER ON THE LABS WE LOOKED 1319 00:51:42,080 --> 00:51:46,040 AT WHAT THE PROTOCOL HAD PLANNED 1320 00:51:46,040 --> 00:51:49,120 OUT AND THEN WITH PRESILLAS KEEN 1321 00:51:49,120 --> 00:51:50,880 A AND HER TEAM LOOKED TO SEE 1322 00:51:50,880 --> 00:51:52,440 WHEN LABS COULD BE COMBINED 1323 00:51:52,440 --> 00:51:54,480 WHICH COULD BE MOVED TO ANOTHER 1324 00:51:54,480 --> 00:51:56,360 TIME WHICH COULD BE A LOWER 1325 00:51:56,360 --> 00:51:57,200 VOLUME IN THE COLLECTION WHICH 1326 00:51:57,200 --> 00:52:01,200 WAS A BIG PART OF IT BUT I DO 1327 00:52:01,200 --> 00:52:02,680 BELIEVE MOST OF THEM WERE RUN 1328 00:52:02,680 --> 00:52:06,040 HERE AM I RIGHT BY SAYING THAT 1329 00:52:06,040 --> 00:52:08,480 PRESILLA. 1330 00:52:08,480 --> 00:52:08,920 >> THAT'S CORRECT. 1331 00:52:08,920 --> 00:52:10,240 >> SO, YEAH, WHAT TRISH SAID WAS 1332 00:52:10,240 --> 00:52:12,280 CORRECT. 1333 00:52:12,280 --> 00:52:15,120 ALL THE LABS, CLINICAL LABS WERE 1334 00:52:15,120 --> 00:52:16,600 DONE HERE AND WHAT WAS AVAILABLE 1335 00:52:16,600 --> 00:52:18,360 TO THE LABORATORY OF MEDICINE, 1336 00:52:18,360 --> 00:52:20,320 WE HAVE A--WHAT YOU CALL, WE 1337 00:52:20,320 --> 00:52:21,800 HAVE WONDERFUL LAB TEAM UP HERE, 1338 00:52:21,800 --> 00:52:23,520 I WOULD MAKE A PHONE CALL, THEY 1339 00:52:23,520 --> 00:52:25,480 WOULD ANSWER SAYING THAT HEY, I 1340 00:52:25,480 --> 00:52:28,800 HAVE AN INFANT OF 6 KILOS, COULD 1341 00:52:28,800 --> 00:52:32,120 YOU RUN THIS, COULD DO XYZ TEST 1342 00:52:32,120 --> 00:52:33,600 WITH 1 ML OF BLOOD. 1343 00:52:33,600 --> 00:52:37,560 THEY WOULD CARRY THE TUBE TO THE 1344 00:52:37,560 --> 00:52:38,480 HEMATOLOGY TO CHEMISTRY AND THEY 1345 00:52:38,480 --> 00:52:40,120 WOULD RUN THE TEST SO THIS WAS 1 1346 00:52:40,120 --> 00:52:42,400 OF THE WAY. 1347 00:52:42,400 --> 00:52:47,640 WE WERE ABLE TO STAY WITHIN THE 1348 00:52:47,640 --> 00:52:48,360 CLINICAL CENTER GUIDELINES ABLE 1349 00:52:48,360 --> 00:52:58,680 TO DO ALL THE TESTS. 1350 00:52:58,680 --> 00:52:59,600 >> THANK YOU. 1351 00:52:59,600 --> 00:53:00,680 SO THE REMAINING COMMENTS THAT 1352 00:53:00,680 --> 00:53:04,320 WE'VE SEEN ARE ALL 1353 00:53:04,320 --> 00:53:05,480 CONGRATULATIONS WHICH I WILL 1354 00:53:05,480 --> 00:53:07,280 SHARE WITH OUR PRESENTERS BUT I 1355 00:53:07,280 --> 00:53:10,160 JUST AGAIN WANT TO THANK EACH OF 1356 00:53:10,160 --> 00:53:12,200 YOU AND DR. [INDISCERNIBLE] 1357 00:53:12,200 --> 00:53:13,520 BEHIND THE SCENES WITH THE 1358 00:53:13,520 --> 00:53:16,840 SLIDES HERE ON ORGANIZING AN 1359 00:53:16,840 --> 00:53:17,600 EXCELLENT PRESENTATION BUT TO 1360 00:53:17,600 --> 00:53:21,560 THANK EVERYBODY WHO WAS INVOLVED 1361 00:53:21,560 --> 00:53:24,000 WITH THE PROTOCOL AND WITH, YOU 1362 00:53:24,000 --> 00:53:28,600 KNOW FROM OUR EXECUTIVE 1363 00:53:28,600 --> 00:53:30,600 LEADERSHIP THROUGH OUR 1364 00:53:30,600 --> 00:53:31,080 INSTITUTE, PARTNERS AND 1365 00:53:31,080 --> 00:53:32,320 COLLEAGUES AND THE AT CLINICAL 1366 00:53:32,320 --> 00:53:33,800 CENTER, WE REALLY SET THE GROUND 1367 00:53:33,800 --> 00:53:37,320 WORK FOR FUTURE STUDIES IN THE 1368 00:53:37,320 --> 00:53:40,400 RESEARCH OF INFANTS AND AGAIN, 1369 00:53:40,400 --> 00:53:41,480 THANK YOU PRESENTERS. 1370 00:53:41,480 --> 00:53:44,400 REMIND PEOPLE TO SUBMIT IT FOR 1371 00:53:44,400 --> 00:53:46,040 THEIR CME CREDIT AND AGAIN, I 1372 00:53:46,040 --> 00:53:49,920 WISH ALL NURSES A HAPPY NURSES 1373 00:53:49,920 --> 00:53:52,320 WEEK AND I THANK YOU ALL AND 1374 00:53:52,320 --> 00:53:55,400 THANK YOU FOR THE OPPORTUNITY TO 1375 00:53:55,400 --> 00:53:57,440 HAVE OUR WONDERFUL NURSE 1376 00:53:57,440 --> 00:00:00,000 COLLEAGUES PRESENT TODAY, THANK YOU