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

Conditions

• Freeman-Burian Syndrome
• Freeman-Sheldon Syndrome
• Whistling Face Syndrome
• Sheldon-Hall Syndrome
• Freeman-Sheldon Syndrome Variant
• Arthrogryposis Distal Type 1
• Arthrogryposis Distal Type 3
• Gordon Syndrome

Interventions

• OTHER: Guided Health History for Freeman-Burian Syndrome Questionnaire
• OTHER: Freeman-Burian syndrome Semi-Structured Quality of Life Interview
• OTHER: Medical Records Review
• OTHER: PTSD Checklist for DSM-5
• OTHER: Modified Flanagan Quality of Life Scale
• OTHER: Center for Epidemiologic Studies Depression Scale
• OTHER: Review of Systems
• OTHER: FACE-Q | Craniofacial - Appearance of the Face
• OTHER: FACE-Q | Craniofacial - Appearance Distress
• OTHER: FACE-Q | Craniofacial - Facial Function

Sponsor

Dufresne, Craig, MD, PC