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

Conditions:   Freeman-Sheldon Syndrome;   Arthrogryposis Distal Type 2A;   Whistling Face Syndrome;   Craniocarpotarsal Dysplasia;   Craniocarpotarsal Dystrophy;   Freeman-Sheldon Syndrome Variant;   Sheldon-Hall Syndrome;   Arthrogryposis Distal Type 2B;   Gordon Syndrome;   Arthrogryposis Distal Type 3;   Arthrogryposis Distal Type 1;   Arthrogryposis, Distal, Type 1A;   Arthrogryposis Distal Type 1B;   Arthrogryposis, Distal;   Craniofacial Abnormalities;   Arthrogryposis
Interventions:   Other: PTSD Checklist-Civilian (PCL-C);   Other: Modified Flanagan Quality of Life Scale;   Other: Center for Epidemiologic Studies Depression Scale (CES-D);   Other: Functional Enquiry (or Review of Systems) Form;   Other: Study of Therapeutic Outcomes and Practices in Freeman-Sheldon Syndrome (STOP-FSS) Questionnaire;   Other: FSRG Semi-Structured Quality of Life Interview (FSRG SSQLI);   Other: Medical Records Review
Sponsor:   Freeman-Sheldon Research Group, Inc.
Recruiting - verified April 2017

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