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Rare Diseases: The challenges presented by Biospecimens, Patient Registries, Electronic Heath Record and Bioethics

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Air date: Thursday, May 31, 2012, 1:00:00 PM
Time displayed is Eastern Time, Washington DC Local
Views: Total views: 302, (153 Live, 149 On-demand)
Category: Biospecimens
Runtime: 01:51:50
Description: Presentations include: Rare disease research, patient registries, and biospecimens: A translational scientist’s perspectives on mitochondrial disease Dr. Marni J. Falk. Assistant Professor of Pediatrics Division of Human Genetics The Children's Hospital of Philadelphia  “Unlocking the unstructured information in EHRs: the role of natural language processing technology in integrating patient clinical information” Dr. Philip Resnik, Professor at the Department of Linguistics and Institute for Advanced Computer Studies, University of Maryland College Park and  “Ethical issues and challenges surrounding research in rare diseases: informed consent, privacy, data sharing, and return of results” Dr. Rachel Dvoskin Genetics Research Analyst, Genetics and Public Policy Center Johns Hopkins Berman Institute of Bioethics

For more information, visit
http://biospecimens.ordr.info.nih.gov
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NLM Title: Rare diseases : the challenges presented by biospecimens, patient registries, electronic heath record, and bioethics [electronic resource] / Marni J. Falk, Philip Resnik, and Rachel Dvoskin ; Biospecimens Interest Group.
Author: Falk, Marni J.
National Institutes of Health (U.S.). Biospecimen Interest Group.
Publisher:
Abstract: (CIT): Presentations include: Rare disease research, patient registries, and biospecimens: A translational scientist"s perspectives on mitochondrial disease Dr. Marni J. Falk. Assistant Professor of Pediatrics Division of Human Genetics The Children's Hospital of Philadelphia "Unlocking the unstructured information in EHRs: the role of natural language processing technology in integrating patient clinical information" Dr. Philip Resnik, Professor at the Department of Linguistics and Institute for Advanced Computer Studies, University of Maryland College Park and "Ethical issues and challenges surrounding research in rare diseases: informed consent, privacy, data sharing, and return of results" Dr. Rachel Dvoskin Genetics Research Analyst, Genetics and Public Policy Center Johns Hopkins Berman Institute of Bioethics For more information, visit http://biospecimens.ordr.info.nih.gov.
Subjects: Bioethical Issues
Electronic Health Records
Mitochondrial Diseases
Rare Diseases
Registries
Specimen Handling
Publication Types: Lectures
Webcasts
Download: To download this event, select one of the available bitrates:
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Caption Text: Download Caption File
NLM Classification: QZ 140
NLM ID: 101587426
CIT Live ID: 11244
Permanent link: http://videocast.nih.gov/launch.asp?17295

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