Primary Ciliary Dyskinesia Registry
E
Evans Machogu, MD
Primary Investigator
Overview
Our purpose for this research study is to learn more about Primary Ciliary Dyskinesia (PCD) through the creation of a secure electronic clinical registry. Through this registry, we will be able to follow people living with PCD over time to learn more about how PCD affects people’s health and the treatment people take.
Description
Researchers will record medical information about primary ciliary dyskinesia (PCD) from participants' records. This may include information about their diagnosis, testing, symptoms, and treatments they have undergone. Researchers will continue to follow participants' health journeys and record relevant health events. Other researchers may use de-identified information from the Registry to learn more about PCD.
Eligibility
You may be eligible for this study if you meet the following criteria:
-
Conditions:
primary ciliary dyskinesia
-
Age: - 90 Years
-
Gender: All
Inclusion Criteria:
- Documentation of confirmed diagnosis of PCD. For the pilot, diagnosis by either hallmark ciliary ultrastructure abnormality confirmed at a PCD expert site OR two known disease-causing mutations in a known PCD gene. For subsequent enrollment individuals diagnosed by low nNO testing (<77nl/min) on two separate occasions at least two months apart plus a compatible clinical phenotype will also be included
- Written informed consent, and assent for minors as applicable
- Followed as a patient at a PCD Foundation Clinical and Research Network center in North America
Exclusion Criteria:
- Inability to understand the requirements of the study or be unwilling to provide written informed consent (as evidenced by signature on an informed consent document approved by the IRB) OR inability of parent/guardian to understand the requirements of the study
Updated on
06 May 2024.
Study ID: 16220, PPUL-VANDERBILT-PCDFR
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