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

> **NCT05419245** · — · UNKNOWN · sponsor: **Dufresne, Craig, MD, PC** · enrollment: 20 (estimated)

## Conditions studied

- 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

## Key facts

- **NCT ID:** NCT05419245
- **Lead sponsor:** Dufresne, Craig, MD, PC
- **Sponsor class:** OTHER
- **Phase:** —
- **Study type:** OBSERVATIONAL
- **Status:** UNKNOWN
- **Start date:** 2022-06-01
- **Primary completion:** 2023-12
- **Final completion:** 2023-12
- **Target enrollment:** 20 (ESTIMATED)
- **Last updated:** 2022-07-19


## Primary source

ClinicalTrials.gov registry: https://clinicaltrials.gov/study/NCT05419245

## Citation

> US National Library of Medicine, ClinicalTrials.gov registration NCT05419245, "Survey Study and Records Review of Treatment Outcomes in Freeman-Sheldon Syndrome". Retrieved via AI Analytics 2026-06-02 from https://api.ai-analytics.org/clinical/NCT05419245. Licensed CC0.

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