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Gordon Syndrome clinical trials

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NCT ID: NCT05419245 Recruiting - Clinical trials for Arthrogryposis Distal Type 3

Survey Study and Records Review of Treatment Outcomes in Freeman-Sheldon Syndrome

FINDFSS
Start date: June 1, 2022
Phase:
Study type: Observational

The purpose of this study is to evaluate the difference in diagnosis accuracy, treatment outcomes, patient perspectives, facial function and walking ability, emotional and social health, and respiratory complications between Freeman-Burian syndrome (formerly, Freeman-Sheldon or whistling face syndrome), Sheldon-Hall syndrome, and distal arthrogryposis types 3, and 1. The approximate cumulative total time for study-related activities will be 3 hours, including email communication, survey completion, and a medical interview. The study will involve completing 6 short ½ to 1-page surveys and participating in a medical interview. Participants may be asked to provide medical records for review. All study-related activities will take place remotely, and no travel is required.