A new pediatric registry has been created by a Bassett Healthcare Network doctor to study health outcomes among transgender and gender nonconforming youth. It is believed to be the country’s first such registry based in a rural area.
The registry and associated research will inform the care of patients in the network’ s Gender Wellness Center and contribute to filling a national data gap, according to doctors Carolyn Wolf-Gould and Anne Gadomski.
“The treatment of trans youth with pubertal blocking medications and hormones is a relatively new phenomenon,” said Dr. Wolf-Gould, founder of the Gender Wellness Center. “There is a research gap in terms of long-term effects like any new therapy. It takes time to build a body of research.”
While some European countries have offered those treatments since 1997, they have only been available in the United States for about a decade, she said. Dr. Norman Spack, a specialist in endocrinology at Boston Children’s Hospital, was one of the first doctors in the United States to advocate the therapy for minors.
Dr. Anne Gadomski, a pediatrician and director of the Bassett Research Institute, received a World AIDS Day New York Commissioner’s Special Recognition in December for her work creating the database, an award for which Wolf-Gould nominated her.
Gender-affirming treatments have been shown to improve patients’ psychological outcomes, Gadomski said.
“The narrative gets better with transition,” she said of higher rates of mental health disorders and other issues in the transgender and gender nonconforming population. “We will try to add to that data and verify that is the case.”
Researchers Jane O’Bryan and Kim Leon are writing two papers thus far based on study of the registry, on rates of eating disorders and non-suicidal self harm. Gadomski said she expects that doctors will gain better understandings of specific clinical conditions and trends resulting from different interventions.
Participation in the database is voluntary, and 113 GWC patients in different stages of transition are now involved. All took surveys assessing their quality of life, and most are adolescents between the ages of 11 and 21, Wolf-Gould said.
The GWC has about 400 adult patients, and an adult registry may be in future plans, Wolf-Gould said, depending on funding and enhanced electronic medical records. Bassett’s electronic medical record update in April made the pediatric registry possible, she said.
Wolf-Gould noted that there is a particular research gap in rural populations, and said that the National Institutes of Health is beginning to work on funding registries for trans youth, mostly in urban areas.
Erin Jerome, staff writer, may be reached at firstname.lastname@example.org 441-7221. Follow her at @DS_ErinJ on Twitter.