Abstract Details

Title Fragmentary Health Data of Patients with Multiple Sclerosis with Alternate Gender Identity

Topic Health Care Disparities

Presentation(s) Health Care Disparities Posters (7:00 AM-5:00 PM)

Poster/Presentation
Number 017

Background Lesbian, gay, bisexual, transgender, queer and questioning (LGBTQQ) patients experience healthcare disparities and are more susceptible to hardship. Transgender people (TGP) have unique sex- and gender-related biological and sociological factors that contribute to health risks. In 2011, the Institute of Medicine highlighted the need to collect data on sexual orientation (SO) and GI to better address the health needs of the LGBTQQ population. However, almost a decade later, many electronic health records (EHRs) derived from surveys in clinical settings and registries show SO/GI data deficiencies. On the other hand, when SO/GI items are present in health surveys, TGPs or individuals with alternate gender identities may ignore them due to stigma or avoidance of pathologization. Consequently, these incomplete records have been excluded from clinical analyses in earlier studies of patients with multiple sclerosis (pwMS). Here, we assessed the SO/GI data in the NARCRMS registry.

Objective To create awareness of the importance of collecting gender identity (GI) data in real-world studies by describing the experience of the North American Registry for Care and Research in Multiple Sclerosis (NARCRMS).

Design/Methods The NARCRMS registry contains data of pwMS age 18-50 years across 24 sites from the US and Canada. The NARCRMS patient questionnaire includes a gender item with 4 choices: male, female, transgender male, transgender female. Sociodemographic and available MS-related clinical data (between December 2016 and May 2020) will be evaluated in reported and underreported SO/GI records.

Results

Of 722 patients, 32 (4.4%) did not declare their gender, 513 (71.0%) identified as female, 177 (24.5%) as males, 0 as transgender female, and 2 (0.2%) as transgender male.

Conclusions

SO/GI data deficiencies in clinical trials/settings and registries need to be addressed. Gender identity information with complete clinical data is important to identify health risks and to ensure comprehensive and equitable health care for the LGBTQQ population.

Supported by: Biogen

Authors/Disclosures
Coraly Perez Bajandas PRESENTER	Ms. Perez Bajandas has received personal compensation for serving as an employee of Biogen. Ms. Perez Bajandas has received stock or an ownership interest from Biogen.
	No disclosure on file
	No disclosure on file
Denise I. Campagnolo, MD, MS	Dr. Campagnolo has received personal compensation for serving as an employee of Biogen. Dr. Campagnolo has received stock or an ownership interest from Biogen.
Wanda Castro-Borrero, MD	Dr. Castro-Borrero has received personal compensation for serving as an employee of BIOGEN. Dr. Castro-Borrero has received stock or an ownership interest from BIOGEN.