Terminated OBSERVATIONAL NCT01144741

Survey Study and Records Review of Treatment Outcomes in Freeman-Sheldon Syndrome (STOP-FSS)

Study of Therapeutic Outcomes and Practices in Freeman-Sheldon Syndrome

Sponsor: Freeman-Sheldon Research Group, Inc.

Conditions Arthrogryposis Arthrogryposis Distal Type 1 Arthrogryposis Distal Type 1B Arthrogryposis Distal Type 2A Arthrogryposis Distal Type 2B Arthrogryposis Distal Type 3 Arthrogryposis, Distal Arthrogryposis, Distal, Type 1A Craniocarpotarsal Dysplasia Craniocarpotarsal Dystrophy Craniofacial Abnormalities Freeman-Sheldon Syndrome Freeman-Sheldon Syndrome Variant Gordon Syndrome Sheldon-Hall Syndrome Whistling Face Syndrome

Interventions Center for Epidemiologic Studies Depression Scale (CES-D) FSRG Semi-Structured Quality of Life Interview (FSRG SSQLI) Functional Enquiry (or Review of Systems) Form Medical Records Review Modified Flanagan Quality of Life Scale PTSD Checklist-Civilian (PCL-C) Study of Therapeutic Outcomes and Practices in Freeman-Sheldon Syndrome (STOP-FSS) Questionnaire

Updated 12 times since 2017 Last updated: Jun 15, 2022 Started: Feb 28, 2010 Primary completion: Jun 14, 2022 Completion: Jun 14, 2022

This information is for research purposes only and is not medical advice. Consult a healthcare provider before making any medical decision.

Terminated

Insufficient patient enrolment

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A observational or N/A phase clinical study on Arthrogryposis and Arthrogryposis Distal Type 1, this trial is terminated or withdrawn. The trial is conducted by Freeman-Sheldon Research Group, Inc. and has accumulated 12 data snapshots since 2010. Longitudinal tracking of this trial contributes to a broader understanding of treatment development timelines.

Status Flow

Change History

12 versions recorded

Sep 2024 — Present [monthly]

Terminated
Jul 2024 — Sep 2024 [monthly]

Terminated
Jul 2022 — Jul 2024 [monthly]

Terminated

Status: Recruiting → Terminated
Dec 2021 — Jul 2022 [monthly]

Recruiting
Jan 2021 — Dec 2021 [monthly]

Recruiting

▶ Show 7 earlier versions

Nov 2020 — Jan 2021 [monthly]

Recruiting
Jun 2018 — Nov 2020 [monthly]

Recruiting
May 2018 — Jun 2018 [monthly]

Recruiting
Apr 2018 — May 2018 [monthly]

Recruiting

Phase: NA → None
Aug 2017 — Apr 2018 [monthly]

Recruiting NA
May 2017 — Aug 2017 [monthly]

Recruiting NA

Status: Unknown Status → Recruiting
Jan 2017 — May 2017 [monthly]

Unknown Status NA

First recorded

Feb 2010

Trial started

Per CT.gov start date — pre-dates our first snapshot

Eligibility Summary

No eligibility information available.

Contact Information

Sponsor contact:

Freeman-Sheldon Research Group, Inc.

Data source: Freeman-Sheldon Research Group, Inc.

For direct contact, visit the study record on ClinicalTrials.gov .

Study Locations

• Buckhannon, United States