RECRUITING

Rhizomelic Chondrodysplasia Punctata 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 medical information on individuals with rhizomelic chondrodysplasia punctata and closely related conditions. The study team hopes to learn more about these conditions and improve the care of people with it by establishing this registry.

Official Title

Rhizomelic Chondrodysplasia Punctata Registry At Nemours Children's Health

Quick Facts

Study Start:2013-05-17
Study Completion:2030-01-01
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT04569162

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. * Diagnosed with RCDP or closely related conditions by metabolic and/or genetic testing
  1. * Not meeting diagnosis of RCDP or closely related conditions by study team physician review of prior metabolic and/or genetic testing

Contacts and Locations

Study Contact

Emily Longenecker, BS
CONTACT
302-298-7978
emily.longenecker@nemours.org

Principal Investigator

Michael Bober, MD, PhD
PRINCIPAL_INVESTIGATOR
Nemours

Study Locations (Sites)

Nemours
Wilmington, Delaware, 19803
United States

Collaborators and Investigators

Sponsor: Nemours Children's Clinic

  • Michael Bober, MD, PhD, 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 Date2013-05-17
Study Completion Date2030-01-01

Study Record Updates

Study Start Date2013-05-17
Study Completion Date2030-01-01

Terms related to this study

Additional Relevant MeSH Terms

  • RCDP - Rhizomelic Chondrodysplasia Punctata
  • RCDP1
  • RCDP2
  • RCDP3
  • RCDP4
  • RCDP5