Rhizomelic Chondrodysplasia Punctata Registry at A.I. duPont Hospital for Children
Status: Recruiting
Closest Recruiting Location:
Nemours
Wilmington DE, USA (116.3 mi away)
Study Type: Observational [Patient Registry]
SUMMARY
The goal of this registry is to collect medical information on individuals with rhizomelic chondrodysplasia punctata and closely related conditions. The study team hopes to learn more about these conditions and improve the care of people with it by establishing this registry.
Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: No
View:
• Diagnosed with RCDP or closely related conditions by metabolic and/or genetic testing
Locations
United States
Delaware
Nemours
Recruiting
Wilmington
Contact Information
Primary
Andrea Schelhaas, MS, CGC
andrea.schelhaas@nemours.org
302-298-2445
Backup
Cassondra Brown, MS, CCRC
cassondra.brown@nemours.org
302-298-7930
Time Frame
Start Date: May 17, 2013
Estimated Completion Date: January 1, 2030
Participants
Target number of participants: 100
Authors
Michael Bober
Related Therapeutic Areas
Sponsors
Leads: Nemours Children's Clinic
Collaborators: RhizoKids International