ONEONTA, N.Y. — 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 Daily Star, a New York state newspaper, reports.
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 Daily Star reports.
“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, according to the Daily Star. “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, the Daily Star reports.
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, the Star reports.
Participation in the database is voluntary, and 113 Gender Wellness Center 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, the Daily Star reports.