Primordial Dwarfism Registry

Part of paid clinical trials in Wilmington, Delaware.

Sponsor
Nemours Children's Clinic
Study ID
NCT04569149
Status
Recruiting
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Conditions

  • IMAGe Syndrome
  • LIG4 Syndrome
  • MOPDII
  • Meier-Gorlin Syndrome
  • Microcephalic Primordial Dwarfism
  • RNU4atac-opathy (e.g MOPDI, Lowry-Wood Syndrome, and Roifman Syndrome)
  • Saul-Wilson Syndrome

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Not accepted

Study Details

The goal of this registry is to collect information on individuals with forms of microcephalic primordial dwarfism as well as related conditions. The study team hopes to learn more about these conditions and improve the care of people with them by establishing this registry.

Key Dates

Start date
Mar 11, 2008
Status verified
Sep 2025
Primary completion
Jan 1, 2030
Completion
Jan 1, 2030

Study Design

Enrollment
200 participants (estimated)

Primary Outcome Measure

Characterization of the natural history of various forms of primordial dwarfism [ Time Frame: 5 years ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
NemoursWilmingtonDelaware19803
Angela Duker, MS, CGC
[email protected]
302-651-4181
Emily Longenecker, BS
[email protected]
302-298-7978
Angela Duker, MS, CGC (PRINCIPAL_INVESTIGATOR)

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Nemours· Wilmington, DE