NIH’s LGBTI research

Society Emphasizes Endocrine Perspective for NIH Strategic LGBTI Research Activities

The membership of the Endocrine Society includes clinicians and researchers dedicated to improving the health of transgender individuals and persons with disorders of sexual development (DSD).

Recognizing this important expertise provided by our members, the Society is working to ensure endocrinology informs critical public health issues for transgender/ DSD populations. The National Institutes of Health (NIH) is developing new initiatives to address health needs for Lesbian, Gay, Bisexual, Transgender and Intersex (LGBTI) populations in response to a 2011 report by the Institute of Medicine (IOM) that assessed the state of the science and current knowledge surrounding health issues for LGBTI populations. The report, commissioned by the NIH, outlined a research agenda to “help the NIH focus its research in this area.” As a response to the IOM report, the NIH released a detailed analysis in January 2013 of the current research portfolio as it relates to the IOM recommendations. In order to address the array of health and research needs identifi ed in the IOM and NIH reports, the NIH has begun a process to develop a new LGBTI Research Strategic Plan.

The Endocrine Society’s membership offers vital expertise to help the NIH address unmet needs through the LGBTI research plan, particularly for transgender individuals and individuals with intersex conditions or DSD. Therefore, when the NIH released a Request for Information (RFI) to help advance the LGBTI Research Strategic Plan, the Society gathered a panel of subject matter experts to develop an impactful response. In its response, the Society identifi ed a number of critical knowledge gaps and barriers to research and care. The Society further noted specifi c clinical and basic research areas that require coordinated efforts and funding. Finally, the Society made a number of recommendations for the NIH to consider as it implements the Strategic Plan. Critically, the Society emphasized that patient outcomes should be the focus of research for transgender and DSD conditions.

Recognizing the integral role of endocrinology in these initiatives, the NIH continues to engage with the Endocrine Society to further inform the LGBTI Research Strategic Plan and component activities. In January 2014, the NIH invited the Society’s participation in a public listening session on transgender health during which the NIH sought input from critical stakeholders.

Dr. Joshua Safer delivered comments on behalf of the Society, emphasizing basic research priorities and infrastructure requirements to meet clinical research needs that will improve the health of transgender patients. At the same time, the Eunice Kennedy Shriver National Institute of Childhood and Human Development (NICHD) invited the Endocrine Society to submit additional comments to inform a workshop on “the impacts of disorders of sex development on child development, from infancy through adolescence, for affected individuals and their families.” Society staff met with NICHD policy staff, including a member of the LGBTI Research Coordinating Committee, to explore additional ways to help the NICHD as it develops the workshop and other activities to support DSD research.

The Endocrine Society recognizes that the current state of care for transgender and intersex/DSD patients is extremely fragmented, with signifi cant regional and international disparities in quality and access to care. The Society enthusiastically supports the activities of the NIH LGBTI Research Coordinating Committee and NICHD in their efforts to advance LGBTI health. Society staff will continue to work closely with the NIH as the Research Coordinating Committee develops the LGBTI Research Strategic Plan and implements activities to address the unmet health needs for these populations.

Ongoing activities to integrate endocrinology into the LGBTI Research Strategic Plan are examples of how the Endocrine Society works with the NIH to ensure that endocrinology is appropriately considered as the NIH develops strategic plans. Society members are encouraged to become active participants in these collaborative efforts with the NIH.

To learn more about the Society’s NIH outreach efforts or to suggest focus areas for consideration, contact the Society’s Government and Public Affairs Department at govtprof@endocrine.org.

— Laakso is the manager of Science Policy at the Endocrine Society.

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