Fragile X Online Registry With Accessible Research Database (FORWARD)

Date Added
March 30th, 2020
PRO Number
Pro00097724
Researcher
Caroline Buchanan

List of Studies

Keywords
Genetics, Non-interventional, Rare Diseases
Summary

FORWARD, the Fragile X Registry and Database, is the largest resource of clinical and demographic data of the Fragile X syndrome (FXS) population in the United States. FORWARD was created to improve the care and quality of life for those living with FXS. By collecting and monitoring changing data, researchers and healthcare professionals can better understand the experiences of individuals with FXS and their families. Information collected from families like yours will be used to develop best practice guidelines for the care of individuals with FXS around the world.

Institution
Self Regional
Recruitment Contact
Jennifer Stallworth
8642507944
jstallworth@ggc.org



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