MOPDIIRare diseaseChildren's health
What this study is
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.
Study details
- Official title
- Primordial Dwarfism Registry at Nemours Children's Hospital, Delaware
- Sponsor
- Nemours Children's Clinic
- Conditions
- 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
- Enrolling
- 200 people
- Starts
- 2008-03-11
- Est. completion
- 2030-01-01
- Record
- View on ClinicalTrials.gov ↗
Who can join
Sex ALLHealthy volunteers Not acceptedYou may qualify if
- 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.
You can't join if
- Individuals without microcephalic primordial dwarfism or closely related conditions
Sign in and we'll check these against your records.Full criteria on ClinicalTrials.gov ↗
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1
Study locations (1)
1 openNemours
Wilmington, Delaware, United States
- Angela Duker, MS, CGC · Contact302-651-4181aduker@nemours.org
- Emily Longenecker, BS · Contact302-298-7978emily.longenecker@nemours.org
- Angela Duker, MS, CGC · Principal investigator
Recruiting
Study team
Sponsor
Nemours Children's Clinic
Study ID MB001
Principal investigator
Angela Duker, MS
Nemours
Have questions? The contacts above can answer them before you apply.
Frequently asked questions
The sponsor hasn't published answers to common questions for this trial.