Status:

COMPLETED

PCD New Gene Discovery

Lead Sponsor:

Vanderbilt University Medical Center

Conditions:

Primary Ciliary Dyskinesia

Eligibility:

All Genders

Up to 90 years

Brief Summary

This is a new gene discovery program for individuals with PCD who do not have a specific genetic etiology identified. Research procedures involve a single blood draw from the affected individual and f...

Detailed Description

The objective of this study is to better define how the genes that cause primary ciliary dyskinesia (PCD) are related to the clinical symptoms of individuals with PCD. PCD is a rare disease that affec...

Eligibility Criteria

Inclusion

  • • Age 0-90 years
  • Confirmed diagnosis of PCD by either ciliary ultrastructure abnormality or two known disease-causing alleles in a known PCD gene OR individuals with clinical suspicion of PCD without a confirmatory test (genetics or ciliary biopsy) as defined by: low nasal nitric oxide testing (\<77nl/min) on two separate occasions at least two months apart or compatible clinical phenotype, but unable to do nasal nitric oxide testing secondary to age or other factors OR relative of one of the previously defined individuals with PCD
  • Ability to provide informed consent or consent of parent/guardian and assent for minors

Exclusion

  • • 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

Key Trial Info

Start Date :

January 7 2019

Trial Type :

OBSERVATIONAL

Allocation :

ACTUAL

End Date :

November 20 2024

Estimated Enrollment :

10 Patients enrolled

Trial Details

Trial ID

NCT03801395

Start Date

January 7 2019

End Date

November 20 2024

Last Update

November 25 2024

Active Locations (1)

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Page 1 of 1 (1 locations)

1

Vanderbilt Children's hospital

Nashville, Tennessee, United States, 37232