Status:

COMPLETED

Long-term Lung Function and Disease Progression in Children With Early Onset Primary Ciliary Dyskinesia Lung Disease

Lead Sponsor:

University of North Carolina, Chapel Hill

Collaborating Sponsors:

National Heart, Lung, and Blood Institute (NHLBI)

Conditions:

Kartagener Syndrome

Eligibility:

All Genders

Up to 4 years

Brief Summary

Primary ciliary dyskinesia (PCD), also known as Kartagener syndrome, is a genetic disorder of the cilia, which are microscopic hair-like cells. Cilia work to keep the respiratory system clean by movin...

Detailed Description

PCD, or Kartagener syndrome, is a genetic disorder that causes hair-like cells called cilia to move improperly, or in some cases, not at all. Cilia are needed to help clear the respiratory system of p...

Eligibility Criteria

Inclusion

  • Younger than 5 years of age
  • Diagnosis of PCD or probable PCD based on criteria listed above
  • Parent or legal guardian willing to give informed consent

Exclusion

  • Unable to attend follow-up appointments
  • History of lung transplant
  • Any co-existing severe diseases that may have significant impact on lung function, respiratory infections, or overall health status (i.e., severe congenital heart disease, severe scoliosis, AIDS, cancer, or end-stage kidney disease)

Key Trial Info

Start Date :

July 1 2008

Trial Type :

OBSERVATIONAL

Allocation :

ACTUAL

End Date :

August 1 2019

Estimated Enrollment :

48 Patients enrolled

Trial Details

Trial ID

NCT00722878

Start Date

July 1 2008

End Date

August 1 2019

Last Update

October 7 2019

Active Locations (6)

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Page 1 of 2 (6 locations)

1

Stanford University, Palo Alto

Palo Alto, California, United States, 94304

2

The Children's Hospital, Denver

Denver, Colorado, United States, 80045

3

Washington University in St. Louis

St Louis, Missouri, United States, 63110

4

University of North Carolina, Chapel Hill

Chapel Hill, North Carolina, United States, 27599