Primordial Dwarfism Registry

About the study

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 take part

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

INCLUSION CRITERIA

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

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 Details

Contition

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

Participants Needed

200

Est. Completion Date

Jan 1, 2030

Treatment Type

OBSERVATIONAL

Sponsor

Nemours Children's Clinic

ClinicalTrials.gov NCT Identifier

NCT04569149

Study Number

MB001

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