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RCDP Natural History Study

Recruitingn/aAges 6 Months - 21 YearsAllMED-LIFE DISCOVERIES LP
NCT04031287 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

A prospective, longitudinal observational trial in patients with RCDP. Study participants will be evaluated at baseline and approximately every 6 months by the study team. Quality of life, physiologic and functional measurements will be performed. In addition, audiologic recordings and other surveys will be completed at home by parents beginning at baseline and every 3-6 months thereafter.

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📋 Eligibility rules (as published)
Inclusion Criteria: * Diagnosis of RCDP age range 6 months to 21 years * A clinical diagnosis of RCDP confirmed with biochemical parameters defined as C16:0 plasmalogen level of less than or equal to 0.75 of the lower limit of the normal reference range AND normal very long chain fatty acid levels. Exclusion Criteria: * Disease severity: The study physician will decide whether the child is too ill to travel due to chronic or acute severe cardiac or respiratory compromise. * Guardian or a care-giver who is not available or not capable of providing accurate information about the patient. * Involvement in any other clinical trial.
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What it tests

  • Not listed
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Where

1 site
Alfred I. DuPont Hospital for Children
Wilmington, United States
🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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