Registry for Rhizomelic Chondrodysplasia Punctata
What You Need to Know Before You Apply
What is the purpose of this trial?
This trial aims to gather medical information on individuals with rhizomelic chondrodysplasia punctata (RCDP), a rare genetic condition affecting bone growth and development. By collecting this data, researchers hope to better understand RCDP and improve care for those living with it. Currently, the trial does not test any treatment, as the focus is on learning more through a registry. Individuals diagnosed with RCDP or similar conditions through specific testing might be suitable for this study. As an unphased trial, this study offers participants the opportunity to contribute to vital research that could lead to better understanding and future treatments for RCDP.
Do I need to stop my current medications for this trial?
The trial information does not specify whether you need to stop taking your current medications.
Why are researchers excited about this trial?
Researchers are excited about this trial because it aims to gather comprehensive data on Rhizomelic Chondrodysplasia Punctata (RCDP), a rare genetic disorder with no current cure. By creating a registry, the trial hopes to deepen our understanding of the disease's progression and variability. This information could pave the way for developing targeted therapies in the future, offering hope to patients and families affected by RCDP.
Who Is on the Research Team?
Mahim Jain, MD, PhD
Principal Investigator
Nemours
Are You a Good Fit for This Trial?
Inclusion Criteria
Timeline for a Trial Participant
Screening
Participants are screened for eligibility to participate in the trial
Data Collection
Collection and storage of data extracted from medical records, including specialist evaluations, surgical reports, and imaging results
Follow-up
Participants are monitored for safety and effectiveness after data collection
What Are the Treatments Tested in This Trial?
Interventions
- None
Find a Clinic Near You
Who Is Running the Clinical Trial?
Nemours Children's Clinic
Lead Sponsor
RhizoKids International
Collaborator
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