Status:

COMPLETED

Mapping the Phenotype in Adults With Phelan-McDermid Syndrome

Lead Sponsor:

Boston Children's Hospital

Collaborating Sponsors:

Phelan-McDermid Syndrome Foundation

Conditions:

Phelan-McDermid Syndrome

Autism Spectrum Disorder

Eligibility:

All Genders

22+ years

Brief Summary

The protocol aims to comprehensively define the phenotype of Phelan-McDermid Syndrome and to identify potential genetic factors, which may play a role in the variability of the disease's outcomes. The...

Detailed Description

Phelan-McDermid syndrome (PMS) or 22q13 Deletion syndrome, caused by a loss of one copy of the SHANK3 gene, is characterized by global developmental delay/intellectual disability, motor skills deficit...

Eligibility Criteria

Inclusion

  • Participant is 22 years of age and older at the time of enrollment
  • Participant has been diagnosed with pathogenic deletions or mutations of the SHANK3 gene
  • Participant is proficient in English
  • Participant provided consent

Exclusion

  • None

Key Trial Info

Start Date :

May 22 2018

Trial Type :

OBSERVATIONAL

Allocation :

ACTUAL

End Date :

December 31 2020

Estimated Enrollment :

24 Patients enrolled

Trial Details

Trial ID

NCT03426059

Start Date

May 22 2018

End Date

December 31 2020

Last Update

February 18 2025

Active Locations (6)

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Page 1 of 2 (6 locations)

1

Stanford University

Stanford, California, United States, 94305

2

Rush University Medical Center

Chicago, Illinois, United States, 60612

3

National Institutes of Health

Bethesda, Maryland, United States, 20892

4

Boston Children's Hospital

Boston, Massachusetts, United States, 02115