Methodological advances in patient-centered rare disease research: the UTHealth Houston Turner Syndrome Society of the United States research registry.

"to create tsrr version 2 registry data were exported from peer as a tab-delimited text file transformed into a data frame using a custom python script and imported into uthealth houston redcap after quality control and de-identification (supplemental 1 data)."

"Declarations Ethics approval and consent to participateConsent to participate was received from participants prior to enrollment in the research registry. The study protocol was reviewed and approved by the Committee for the Protection of Human Subjects at the University of Texas Health Science Center at Houston (IRB# HSC-MS-21-0384). Consent for publicationNot applicable. Competing InterestsThe authors declare that they have no competing interests. Competing Interests The authors declare that they have no competing interests."

"Funding This work was supported in part by NIH/NCATS grants UL1 TR000445 and UL1 TR001105. Additionally, this study was supported in part by the Turner Syndrome Society of the United States (TSSUS). TSSUS had no role in study design, data collection, data analysis, or the decision to publish this study."