Primordial Dwarfism Registry

About the study

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. The study team hopes to learn more about these conditions and improve the care of people with it by establishing this registry.

Who can take part

You may be eligible to participate in the study if you meet the following criteria:

INCLUSION CRITERIA

Inclusion Criteria:

Individuals with MOPDII, MOPDI/III, Meier-Gorlin syndrome, or unclassified or closely related types of microcephalic primordial dwarfism as diagnosed by a medical provider are eligible for this registry.

EXCLUSION CRITERIA

Exclusion Criteria:

individuals without microcephalic primordial dwarfism or closely related conditions

Study Locations

Enter your ZIP code/Postal code/PIN code to locate study sites near you:

How to Apply

Contact the study center to learn if this study is a good match for you.

Call 302-651-4181

Email Study Center

Study’s details

Contition

MOPDII,RNU4atac-opathy (e.g. MOPDI/III, Lowry-Wood Syndrome, Roifman Syndrome),Meier-Gorlin Syndrome,Saul-Wilson Syndrome,Ligase 4 Syndrome,Microcephalic Primordial Dwarfism

Participants needed

150

Est. Completion Date

Jan 1, 2030

Treatment type

Observational [Patient Registry]

Sponsor

Nemours Children's Clinic

ClinicalTrials.gov identifier

NCT04569149

Study number

MB001

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