The Turner syndrome research registry: Creating equipoise between investigators and participants.
Am J Med Genet C Semin Med Genet
; 181(1): 135-140, 2019 03.
Article
em En
| MEDLINE
| ID: mdl-30758128
ABSTRACT
To address knowledge gaps about Turner syndrome (TS) associated disease mechanisms, the Turner Syndrome Society of the United States created the Turner Syndrome Research Registry (TSRR), a patient-powered registry for girls and women with TS. More than 600 participants, parents or guardians completed a 33-item foundational survey that included questions about demographics, medical conditions, psychological conditions, sexuality, hormonal therapy, patient and provider knowledge about TS, and patient satisfaction. The TSRR platform is engineered to allow individuals living with rare conditions and investigators to work side-by-side. The purpose of this article is to introduce the concept, architecture, and currently available content of the TSRR, in anticipation of inviting proposals to utilize registry resources.
Palavras-chave
Texto completo:
1
Base de dados:
MEDLINE
Assunto principal:
Pesquisa
/
Síndrome de Turner
/
Sistema de Registros
Limite:
Female
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Humans
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Male
Idioma:
En
Revista:
Am J Med Genet C Semin Med Genet
Assunto da revista:
GENETICA MEDICA
Ano de publicação:
2019
Tipo de documento:
Article