NIH VideoCast - Reproductive Health in Women and Girls with SCD: Gaps to Solutions (Day 1)

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Reproductive Health in Women and Girls with SCD: Gaps to Solutions (Day 1)

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Air date:	Thursday, May 11, 2023, 9:00:00 AM Time displayed is Eastern Time, Washington DC Local
Views:	Total views: 266 (131 Live, 135 On-demand)
Category:	Conferences
Runtime:	06:45:22
Closed captioning:	Check box to display CC outside of the video Note: You can drag the captioning window around and resize it
Description:	Sickle cell disease (SCD) complicates reproductive health for affected individuals. Girls and women with SCD confront challenges associated with menstruation, contraception, infertility risks, and high-risk pregnancy. This workshop assumes a lifespan approach to reproductive health in people with ovaries and sickle cell disease and engages questions related to pathophysiology, clinical care, and structural disparities that need to be addressed to fulfill the promise of high quality, individualized, comprehensive care for girls and women with SCD. During the workshop’s first day, the major themes will be ovarian reserve, menstruation, and contraception. The first session will address the reproductive lifespan and accelerated decline of ovarian reserve as it may have devastating consequences including miscarriage, infertility, and early menopause. The extent to which we know whether or not and how SCD treatments and cures exacerbate these risks will be addressed. As gene therapy trials continue and FDA approval may be near, fertility preservation is a growing concern for the SCD community as existing preparative regimens are gonadotoxic. In the “Reproductive Lifespan & Fertility Preservation in SCD” session, the focus is on highlighting the lack of our understanding the pathophysiology of ovarian reserve decline and to implement access to cryo-tissue preservation early. Other interventions such as genetic counseling and assisted reproductive technologies will also be addressed. Menarche in individuals with SCD may trigger dysmenorrhea and sickle cell acute painful episodes which can disrupt school and work routines and even lead to hospitalization. Hormonal contraception poses several significant challenges including thrombotic risks with estrogen-containing contraception and very limited data on whether contraception use can affect menstruation-associated pain. One session will include a discussion on the pathophysiology of menstruation-related pain in SCD individuals, new NIH funded research on the effects of high levels of endogenous and exogenous sex hormones on thromboembolism, as well as a panel discussion on the choice, risks, and benefits of contraceptive use in SCD. On day two, many dimensions of high risk pregnancy will be addressed. Four drugs are approved to treat SCD; none are approved for pregnant women with SCD. Transfusion is their only option. Pregnant women with SCD may experience SCD complications like pain and acute chest syndrome. They are also at risk for severe adverse pregnancy outcomes. These women require close monitoring during pregnancy by providers who are knowledgeable in both SCD and maternal-fetal medicine. This entire day will focus on complications of pregnancy in SCD. Pathophysiology, in addition to treatment and high-quality multi-disciplinary care for SCD pregnancy implementation will be analyzed by hematologists and reproductive health experts on this second day. Overall, this workshop is the opportunity to discuss gaps and research questions, and build a consensus statement directing integration of reproductive health into comprehensive SCD. The workshop could assist in providing guidelines for generations to ensure holistic, individualized care and will help identify the crucial and unmet research needs for people with SCD. For more information go to https://www.eventbrite.com/e/nhlbi-reproductive-health-in-women-and-girls-with-scd-gaps-to-solutions-tickets-598097936027

NLM Title:	Reproductive health in women and girls with SCD : gaps to solutions / NHLBI, NIH.
Author:	Reproductive Health in Women and Girls with SCD (Workshop) National Heart, Lung, and Blood Institute, National Institutes of Health (U.S.),
Publisher:
Abstract:	(CIT): Sickle cell disease (SCD) complicates reproductive health for affected individuals. Girls and women with SCD confront challenges associated with menstruation, contraception, infertility risks, and high-risk pregnancy. This workshop assumes a lifespan approach to reproductive health in people with ovaries and sickle cell disease and engages questions related to pathophysiology, clinical care, and structural disparities that need to be addressed to fulfill the promise of high quality, individualized, comprehensive care for girls and women with SCD. During the workshop"s first day, the major themes will be ovarian reserve, menstruation, and contraception. The first session will address the reproductive lifespan and accelerated decline of ovarian reserve as it may have devastating consequences including miscarriage, infertility, and early menopause. The extent to which we know whether or not and how SCD treatments and cures exacerbate these risks will be addressed. As gene therapy trials continue and FDA approval may be near, fertility preservation is a growing concern for the SCD community as existing preparative regimens are gonadotoxic. In the "Reproductive Lifespan & Fertility Preservation in SCD" session, the focus is on highlighting the lack of our understanding the pathophysiology of ovarian reserve decline and to implement access to cryo-tissue preservation early. Other interventions such as genetic counseling and assisted reproductive technologies will also be addressed. Menarche in individuals with SCD may trigger dysmenorrhea and sickle cell acute painful episodes which can disrupt school and work routines and even lead to hospitalization. Hormonal contraception poses several significant challenges including thrombotic risks with estrogen-containing contraception and very limited data on whether contraception use can affect menstruation-associated pain. One session will include a discussion on the pathophysiology of menstruation-related pain in SCD individuals, new NIH funded research on the effects of high levels of endogenous and exogenous sex hormones on thromboembolism, as well as a panel discussion on the choice, risks, and benefits of contraceptive use in SCD. On day two, many dimensions of high risk pregnancy will be addressed. Four drugs are approved to treat SCD; none are approved for pregnant women with SCD. Transfusion is their only option. Pregnant women with SCD may experience SCD complications like pain and acute chest syndrome. They are also at risk for severe adverse pregnancy outcomes. These women require close monitoring during pregnancy by providers who are knowledgeable in both SCD and maternal-fetal medicine. This entire day will focus on complications of pregnancy in SCD. Pathophysiology, in addition to treatment and high-quality multi-disciplinary care for SCD pregnancy implementation will be analyzed by hematologists and reproductive health experts on this second day. Overall, this workshop is the opportunity to discuss gaps and research questions, and build a consensus statement directing integration of reproductive health into comprehensive SCD. The workshop could assist in providing guidelines for generations to ensure holistic, individualized care and will help identify the crucial and unmet research needs for people with SCD.
Subjects:	Anemia, Sickle Cell--complications Anemia, Sickle Cell--therapy Fertility Preservation Pregnancy, High-Risk Reproductive Health
Publication Types:	Congress Webcast

NLM Classification:	WH 173
NLM ID:	9918625744106676
CIT Live ID:	49593
Permanent link:	https://videocast.nih.gov/watch=49593

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