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

> **NCT01144741** · — · TERMINATED · sponsor: **Freeman-Sheldon Research Group, Inc.** · enrollment: 2 (actual)

## Conditions studied

- 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

## Key facts

- **NCT ID:** NCT01144741
- **Lead sponsor:** Freeman-Sheldon Research Group, Inc.
- **Sponsor class:** OTHER
- **Phase:** —
- **Study type:** OBSERVATIONAL
- **Status:** TERMINATED
- **Start date:** 2010-02
- **Primary completion:** 2022-06-14
- **Final completion:** 2022-06-14
- **Target enrollment:** 2 (ACTUAL)
- **Why stopped:** Insufficient patient enrolment
- **Last updated:** 2022-06-21


## Primary source

ClinicalTrials.gov registry: https://clinicaltrials.gov/study/NCT01144741

## Citation

> US National Library of Medicine, ClinicalTrials.gov registration NCT01144741, "Survey Study and Records Review of Treatment Outcomes in Freeman-Sheldon Syndrome". Retrieved via AI Analytics 2026-06-23 from https://api.ai-analytics.org/clinical/NCT01144741. Licensed CC0.

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