Development of Repository From a Pediatric Gender Clinic

Objectives: With the publication of updated guidelines for care of transgender and gender non-conforming individuals, there has been an increase in the presence of gender diversity in both mainstream media and medical literature. Several gaps currently exist in medical knowledge regarding long term effects of gender-affirming therapies. There is a lack of standardization in study design, patient sampling, and outcome measures, and most studies are retrospective. Here we describe the creation of both a retrospective and prospective repository of patients who presented to the Massachusetts Medical School-Baystate Medical Center (UMass-Baystate) pediatric gender program. Methods: Baystate Medical Center is located in western MA and is a tertiary referral center. A pediatric gender clinic was created in 2014. A repository containing both retrospective and prospective data was approved by the UMass-Baystate IRB to include patients ages 2 to 24 years of age who presented to our gender clinic. Retrospective data was obtained using the McKesson billing database. Sociodemographic, clinical and behavioral health data were collected. We are consenting individuals as they present to the clinic for the prospective component. Those that have consented fill out a survey at each visit. The repository has been approved to follow outcome data for 25 years. Results: To date, we have 218 individuals in the repository, 75 of which are in the prospective component. Age of presentation ranged from 6 yrs to 24 yrs with an average age of 15 yrs. 62% identified as transmale, 31% as transfemale and the remainder as gender fluid or other. 75% have been prescribed gender affirming hormone therapy (56% GnRH agonist therapy, 20% estrogen, 58% testosterone). Of those being followed prospectively, 76% identified as white, 19% Hispanic. 79% were satisfied or very satisfied with their care. Conclusions: Here we describe the demographic and clinical characteristics of patients that have presented to our gender clinic since 2014. The creation of our gender repository will allow us to assess sociodemographic, clinical and behavioral health outcomes of treatment, including metabolic parameters, bone health, and mental health outcomes in our pediatric population. Future projects include assessment of the change in cardiovascular risk in individuals on gender-affirming hormone therapy.