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

Stopped Insufficient patient enrolment

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.