A Study Providing Genetic Testing to Find Those Who May Have Primary Ciliary Dyskinesia for Potential Clinical Trials

RECRUITING

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Primary purpose is to identify individuals who have PCD due to a genetic mutation within the DNAI1 and other genes of interest to help refer participants to future clinical studies for this rare disease.

Conditions:

Primary Ciliary Dyskinesia

Study Start (Actual) 2023-08-31

Primary Completion (Estimated) 2025-10

Study Completion (Estimated) 2025-12

Enrollment (Estimated) 150

Study Type OBSERVATIONAL

Phase N/A

Locations:

📍 Menlo Park, California, United States

Eligibility Criteria

Description

Inclusion Criteria:

1. Participant must be at least 18 years old.
2. Participant must have a prior diagnosis of PCD or be deemed eligible upon completion of the PCD-enrichment screening questionnaire.
3. Participant must be under the care of an HCP for their PCD or symptoms potentially related to PCD.
4. Participant must be able to read, write, and understand English, and reside in a country where the shipment of biological samples is allowed.
5. Participant must be willing to be tested for genes involved in PCD.
6. Participant must be willing to be notified of eligibility for clinical studies (if appropriate)

Exclusion Criteria:

In ability to meet any of the inclusion criteria

Ages Eligible for Study: 18 Years to N/A (ADULT, OLDER_ADULT)

Sexes Eligible for Study: ALL

Accepts Healthy Volunteers: No

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

First Submitted2023-12-07
First Submitted that Met QC Criteria2023-12-07
First Posted2023-12-15

Study Record Updates

Last Update Submitted that Met QC Criteria2024-05-31
Last Update Posted2024-06-03
Last Verified2024-05