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New registry aims to unlock secrets of rare dwarfism disorders

NCT ID NCT04569149

Recruiting now Knowledge-focused Sponsor: Nemours Children's Clinic Source: ClinicalTrials.gov ↗

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study creates a registry to collect health information from 200 people with rare forms of primordial dwarfism, such as MOPDII and Meier-Gorlin syndrome. Researchers hope to learn how these conditions change over a person's lifetime and improve future care. Participants provide data at enrollment and over time, with no experimental treatments involved.

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Conditions

The condition(s) this trial relates to.

DNA ligase IV deficiency IMAGe syndrome Intrauterine Growth Retardation, Metaphyseal Dysplasia, Adrenal Hypoplasia Congenita, And Genital Anomalies Lowry-Wood syndrome Meier-Gorlin syndrome microcephalic osteodysplastic dysplasia, Saul-Wilson type microcephalic osteodysplastic primordial dwarfism microcephalic osteodysplastic primordial dwarfism type I microcephalic osteodysplastic primordial dwarfism type II RNU4ATAC spectrum disorder Roifman syndrome Seckel syndrome 1 Seckel syndrome 7

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

IMAGE SYNDROME LIG4 SYNDROME MEIER-GORLIN SYNDROME MICROCEPHALIC PRIMORDIAL DWARFISM MOPDII RNU4ATAC-OPATHY (E.G MOPDI, LOWRY-WOOD SYNDROME, AND ROIFMAN SYNDROME) SAUL-WILSON SYNDROME

Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • Nemours

    RECRUITING

    Wilmington, Delaware, 19803, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

    Contact Phone: •••-•••-•••• Email: •••••@•••••