Primordial Registry

Clinical Trial

Offered by: Nemours Children's
Location: Delaware Valley

Trial Name

Primordial Registry at Nemours Children's Hospital, Delaware

What is the trial about?

The goal of this registry is to collect information on individuals with Microcephalic Osteodysplastic Primordial Dwarfism Type II (also called MOPDII) and other forms of microcephalic primordial dwarfism.

Who can participate?

Individuals with MOPDII, MOPDI/III, Meier-Gorlin syndrome, and unclassified or closely related forms of microcephalic primordial dwarfism 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

• Children's Assent Form for Children Ages 7-11 (PDF)
  
• Adolescent Assent Form for Youth Ages 12-17 (PDF)
  
• Informed Consent for Participation in a Research Study (PDF)
  
• Parental Permission for Participation in a Research Study (PDF)
• Authorization to Use/Disclose Protected Health Information (PDF)
• Primordial Participant Brochure (PDF)