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Freeman-Sheldon syndrome Classic Type for Arthrogryposis (FINDFSS Trial)

N/A
Waitlist Available
Led By Craig R Dufresne, MD
Research Sponsored by Dufresne, Craig, MD, PC
Eligibility Criteria Checklist
Specific guidelines that determine who can or cannot participate in a clinical trial
Must have
Timeline
Screening 3 weeks
Treatment Varies
Follow Up 1 week to 1 day before a single study interview, which lasts 1-2 hours
Awards & highlights

Summary

The purpose of this study is to evaluate the difference in diagnosis accuracy, treatment outcomes, patient perspectives, facial function and walking ability, emotional and social health, and respiratory complications between Freeman-Burian syndrome (formerly, Freeman-Sheldon or whistling face syndrome), Sheldon-Hall syndrome, and distal arthrogryposis types 3, and 1. The approximate cumulative total time for study-related activities will be 3 hours, including email communication, survey completion, and a medical interview. The study will involve completing 6 short ½ to 1-page surveys and participating in a medical interview. Participants may be asked to provide medical records for review. All study-related activities will take place remotely, and no travel is required.

Eligible Conditions
  • Gordon Syndrome
  • Freeman-Sheldon Syndrome
  • Arthrogryposis
  • Whistling Face Syndrome
  • Sheldon-Hall Syndrome

Timeline

Screening ~ 3 weeks
Treatment ~ Varies
Follow Up ~1 week to 1 day before a single study interview, which lasts 1-2 hours
This trial's timeline: 3 weeks for screening, Varies for treatment, and 1 week to 1 day before a single study interview, which lasts 1-2 hours for reporting.

Treatment Details

Study Objectives

Study objectives can provide a clearer picture of what you can expect from a treatment.
Primary study objectives
Difference in diagnostic accuracy between groups
Difference in intervention-related outcome rates between groups
Secondary study objectives
Difference in depressive symptoms between groups
Difference in facial appearance distress between groups
Difference in facial appearance satisfaction between groups
+3 more
Other study objectives
Difference in diagnostic accuracy between specialities between all sub-types of Freeman-Burian syndrome and the other diagnosis groups (Sheldon-Hall syndrome, distal arthrogryposis type 3, and distal arthrogryposis type 1)
Difference in foot and ankle surgery-related outcome rates between groups
Difference in general anesthesia-related complication rates between groups
+8 more

Trial Design

6Treatment groups
Experimental Treatment
Group I: Sheldon-Hall syndromeExperimental Treatment10 Interventions
Patients who have all features required by the Stevenson criteria, including: small mouth (not microstomia); neck webbing (pterygium colli); small but prominent chin; very obvious down-slanting crease from the nostril to the corners of the mouth (nasolabial creases); and restricted movement in joints (contractures) of two or more body areas, often hands and feet, with fingers and toes frequently overlapping.
Group II: Freeman-Sheldon syndrome Mixed TypeExperimental Treatment10 Interventions
Patients who have the face and skull physical findings required by the Stevenson criteria and some but not all required joint problems.
Group III: Freeman-Sheldon syndrome Craniofacial TypeExperimental Treatment10 Interventions
Patients who have only the face and skull physical findings required by the Stevenson criteria, including: very small mouth (microstomia), whistling-face appearance (pursed lips), "H" or "V" shaped chin dimple, very obvious down-slanting crease from the nostril to the corners of the mouth (nasolabial creases).
Group IV: Freeman-Sheldon syndrome Classic TypeExperimental Treatment10 Interventions
Patients who have all features required by the Stevenson criteria, including: very small mouth (microstomia); whistling-face appearance (pursed lips); "H" or "V" shaped chin dimple; very obvious down-slanting crease from the nostril to the corners of the mouth (nasolabial creases); and restricted movement in joints (contractures) of two or more body areas, often hands and feet, with fingers and toes frequently overlapping.
Group V: Distal Arthrogryposis Type 3Experimental Treatment8 Interventions
Patients with features consistent with this diagnosis, including: gap in the roof of the mouth (cleft palate); drooping eyelid (blepharoptosis); and spine curve problems; and restricted movement in joints (contractures) of two or more body areas, often hands and feet, with fingers and toes frequently overlapping.
Group VI: Distal Arthrogryposis Type 1Experimental Treatment5 Interventions
Patients with features consistent with this diagnosis, including restricted movement in joints (contractures) of two or more body areas, often hands and feet, with fingers and toes frequently overlapping.

Find a Location

Who is running the clinical trial?

Dufresne, Craig, MD, PCLead Sponsor
3 Previous Clinical Trials
140 Total Patients Enrolled
Craig R Dufresne, MDPrincipal InvestigatorDr Craig R Dufresne, MD, PC
3 Previous Clinical Trials
140 Total Patients Enrolled
~6 spots leftby Sep 2025
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