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Review
. 2021 Sep;194(6):970-979.
doi: 10.1111/bjh.17658. Epub 2021 Jul 7.

Knowledge gaps in reproductive and sexual health in girls and women with sickle cell disease

Lydia H Pecker  1 , Deva Sharma  2 , Alecia Nero  3 , Michael J Paidas  4 , Russell E Ware  5 , Andra H James  6 , Kim Smith-Whitley  7
Affiliations
Review

Knowledge gaps in reproductive and sexual health in girls and women with sickle cell disease

Lydia H Pecker et al. Br J Haematol. 2021 Sep.

Abstract

There is an immediate need to address long-standing questions about the reproductive health of girls and women with sickle cell disease (SCD). There are many SCD-related reproductive risks and uncertainties across girls' and women's reproductive life span, with particularly outstanding concerns about menstruation, contraception, fertility and pregnancy. Extant literature addressing women's reproductive health topics is mostly descriptive; there are few high-quality interventional studies. In 2020, the Centers for Disease Control and Prevention and the Foundation for Women and Girls with Blood Disorders convened an expert panel to assess the knowledge gaps in women's reproductive health in SCD. The panel identified significant limitations to clinical care due to the need for research. The panel also identified prominent barriers to research and care. In this report, we frame these issues, providing a roadmap for investigators, funding agencies, and policy makers to advance care for girls and women with SCD.

Keywords: health disparities; reproductive health; sickle cell disease; women’s health.

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References

    1. DeBaun MR, Ghafuri DL, Rodeghier M, Maitra P, Chaturvedi S, Kassim A, et al.Decreased median survival of adults with sickle cell disease after adjusting for left truncation bias: a pooled analysis. Blood. 2019;133(6):615–7. - PMC - PubMed
    1. Ghafuri DL, Stimpson S-J, Day ME, James A, DeBaun MR, Sharma D. Fertility challenges for women with sickle cell disease. Expert Review of Hematology. 2017;11:1–11. - PubMed
    1. Smith-Whitley K. Reproductive issues in sickle cell disease. Blood. 2014;124(24):3538–43. - PubMed
    1. Lubeck D, Agodoa I, Bhakta N, Danese M, Pappu K, Howard R, et al.Estimated Life Expectancy and Income of Patients With Sickle Cell Disease Compared With Those Without Sickle Cell Disease. Jama Netw Open. 2019;2(11):e1915374. - PMC - PubMed
    1. Sharma D, Day ME, Stimpson S-J, Rodeghier M, Ghafuri D, Callaghan M, et al.Acute Vaso-Occlusive Pain is Temporally Associated with the Onset of Menstruation in Women with Sickle Cell Disease. Journal of Women’s Health. 2019;28(2):162–9. - PubMed

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