RECRUITING

Primordial Dwarfism Registry

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

Primordial Dwarfism Registry at Nemours Children's Hospital, Delaware

Quick Facts

Study Start:2008-03-11
Study Completion:2030-01-01
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT04569149

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:Not specified
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * 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.
  1. * individuals without microcephalic primordial dwarfism or closely related conditions

Contacts and Locations

Study Contact

Angela Duker, MS, CGC
CONTACT
302-651-4181
aduker@nemours.org
Emily Longenecker, BS
CONTACT
302-298-7978
emily.longenecker@nemours.org

Principal Investigator

Angela Duker, MS
PRINCIPAL_INVESTIGATOR
Nemours

Study Locations (Sites)

Nemours
Wilmington, Delaware, 19803
United States

Collaborators and Investigators

Sponsor: Nemours Children's Clinic

  • Angela Duker, MS, PRINCIPAL_INVESTIGATOR, Nemours

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2008-03-11
Study Completion Date2030-01-01

Study Record Updates

Study Start Date2008-03-11
Study Completion Date2030-01-01

Terms related to this study

Keywords Provided by Researchers

  • microcephalic primordial dwarfism

Additional Relevant MeSH Terms

  • 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