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The Turner syndrome research registry: Creating equipoise between investigators and participants
Author(s) -
Prakash Siddharth K.,
LugoRuiz Soniely,
RiveraDávila Michelle,
Rubio Nunilo,
Shah Avni N.,
Knickmeyer Rebecca C.,
Scurlock Cindy,
Crenshaw Melissa,
Davis Shanlee M.,
Lorigan Gary A.,
Dorfman Aaron T.,
Rubin Karen,
Maslen Cheryl,
Bamba Vaneeta,
Kruszka Paul,
Silberbach Michael
Publication year - 2019
Publication title -
american journal of medical genetics part c: seminars in medical genetics
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.419
H-Index - 101
eISSN - 1552-4876
pISSN - 1552-4868
DOI - 10.1002/ajmg.c.31689
Subject(s) - clinical equipoise , psychology , medicine , clinical trial
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.