Rhizomelic Chondrodysplasia Punctata Registry

What is the trial about?

The goal of this registry is to collect information on individuals with Rhizomelic Chondrodysplasia Punctata (RCDP) and other related conditions. The study team hopes to learn more about these diagnoses and improve the care of people with it by establishing this registry.

Who can participate?

Individuals with RCDP types 1, 2, and 3 and other closely related conditions as diagnosed by a physician are eligible for this registry.

What is involved?

This study involves only the collection and storage of data extracted from the medical record. There are no special procedures, visits, or expectations of you as a result of participation in this registry. You will not be asked to have any specific testing for the sole purposes of research.

Consent Documentation

• Parental Permission for Participation in an Observational/Noninterventional Research Study (PDF)
• Authorization to Use/Disclose Protected Health Information (PDF)
• RCDP Participant Brochure (PDF)