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NCT01144741 · ClinicalTrials.gov registry record
Survey Study and Records Review of Treatment Outcomes in Freeman-Sheldon Syndrome
A clinical trial, sponsored by Freeman-Sheldon Research Group.
- Terminated
- Registry status
- 2
- Enrollment target
NCT01144741 is a clinical trial that was terminated before completion, run by Freeman-Sheldon Research Group. The registered enrollment target is 2 participants.
The verdict
NCT01144741 was terminated before completion, sponsored by Freeman-Sheldon Research Group.
- TERMINATED
- Registry status
- 2 participants
- Enrollment target
Study Summary
Freeman-Sheldon syndrome (FSS) is a rare muscle disorder present before birth, involving primarily problems of the face and skull and the hands and feet. This is a study of problems, experiences, helpful treatments, and quality of life focusing on patients with FSS but including patients with Sheldon-Hall syndrome (SHS), distal arthrogryposis type 1 (DA1), and distal arthrogryposis type 3 (DA3), also called Gorden syndrome. These and related disorders are very challenging to treat, partly because the big differences in individual patients and lack of information on previous clinical experience with treatment options. It is hoped the study will identify areas for further research in physiology and therapy. This study will cover all types of treatment \[medical (non-surgical), including psychiatric, and surgical treatments\], even unconventional. It also includes questions about effects on the patient's thoughts, feelings, quality of life, and relationship with siblings, family, and parents' and if any intervention was required or advised. This study will also look for similarities and differences in patients who meet the head and face part of the diagnostic criteria but do not meet all other parts and patients who met the full diagnostic criteria. There will be questions about problems or experiences to investigate if both groups of patients may have the same syndrome. Treatment success depends on getting a correct diagnosis.
Interventions
- OTHER Modified Flanagan Quality of Life Scale
- OTHER PTSD Checklist-Civilian (PCL-C)
- 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
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 2 participants |
| Start Date | 2010-02 |
| Est. Completion | 2022-06-14 |
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Full Details on ClinicalTrials.gov ↗What the Registry Record Tells You About NCT01144741
The ClinicalTrials.gov registry entry for NCT01144741 describes a study currently listed as terminated, categorized as an unspecified phase. The registered enrollment target is 2 participants, a figure that helps gauge the scale of data the investigators plan to collect. The listed sponsor is Freeman-Sheldon Research Group, which has 3 total studies on file at ClinicalTrials.gov.
The record links to 0 conditions, and to 5 interventions - of which Modified Flanagan Quality of Life Scale is the first listed.
NCT01144741 reports 0 study locations.
Frequently Asked Questions
What is clinical trial NCT01144741 about?
NCT01144741 is a clinical study titled "Survey Study and Records Review of Treatment Outcomes in Freeman-Sheldon Syndrome". Freeman-Sheldon syndrome (FSS) is a rare muscle disorder present before birth, involving primarily problems of the face and skull and the hands and feet. This is a study of problems, experiences, helpful treatments, and quality of life focusing on patients with FSS but including patients with Sheld...
What is the current status of trial NCT01144741?
This trial is currently terminated. The enrollment target is 2 participants. The study started on 2010-02. Estimated completion is 2022-06-14.
What interventions are being tested in trial NCT01144741?
The interventions under investigation include: Modified Flanagan Quality of Life Scale (OTHER), PTSD Checklist-Civilian (PCL-C) (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).
Who is sponsoring clinical trial NCT01144741?
This trial is sponsored by Freeman-Sheldon Research Group, which has 3 total clinical trials registered on ClinicalTrials.gov.
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