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

Abstract Background Many different clinical specialists provide care to patients with Turner syndrome (TS), who have highly variable clinical manifestations. Therefore, a national TS registry is essential to inform a cohesive approach to healthcare and research. In 2015, the Turner Syndrome Society...

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Autori principali: Sara Mansoorshahi, Cindy Scurlock, Scientific Advisory Board of the Turner Syndrome Society of the United States Research Registry, Siddharth K Prakash
Natura: Artigo
Lingua:Inglês
Pubblicazione: BMC 2024-03-01
Serie:Orphanet Journal of Rare Diseases
Soggetti:
Turner syndrome
Registry
Patient-centered
Research
Accesso online:https://doi.org/10.1186/s13023-024-03120-1
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