RecruitingNot Applicable

Primordial Dwarfism Registry

United States200 participantsStarted 2008-03-11

Plain-language summary

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.

Who can participate

SexALL

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AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.

Inclusion Criteria: * Individuals with MOPDII, Meier-Gorlin syndrome, IMAGe syndrome, RNU4atac-opathies (MOPDI/III, Roifman syndrome, Lowry-Wood syndrome), LIG4 syndrome, and other classified as well as unclassified types of microcephalic primordial dwarfism and related conditions, as diagnosed by a medical provider, are eligible for this registry. Exclusion Criteria: * individuals without microcephalic primordial dwarfism or closely related conditions

What they're measuring

Characterization of the natural history of various forms of primordial dwarfism

Timeframe: 5 years

Trial details

NCT IDNCT04569149

SponsorNemours Children's Clinic

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2030-01-01

Contact for this trial

Angela Duker, MS, CGC

302-651-4181 aduker@nemours.org

View on ClinicalTrials.gov More MOPDII trials