RecruitingNCT04602481

Living With Primary Ciliary Dyskinesia (Living With PCD)

Living With Primary Ciliary Dyskinesia (Formerly COVID-PCD)


Sponsor

University of Bern

Enrollment

1,500 participants

Start Date

May 31, 2020

Study Type

OBSERVATIONAL

Conditions

Summary

Living with PCD (formerly COVID-PCD) is a participatory research project that aims to answer emerging questions about primary ciliary dyskinesia (PCD) in order to improve the health and quality of life of people with PCD. Persons with confirmed or suspected PCD from anywhere in the world can participate. The study is advertised through patient support groups and participants register online after they read detailed information about the study. Participants receive a detailed questionnaire when they start the study and a follow-up questionnaire (planned once per year). Occasionally, participants receive extra questionnaires focused on special topics. The study is hosted at the University of Bern and recruitment started on May 30th, 2020.


Eligibility

Inclusion Criteria1

  • People of any age with reported suspected or confirmed Primary Ciliary Dyskinesia who gave consent to participate in the study

Exclusion Criteria1

  • People who report not to have suspected or confirmed Primary Ciliary Dyskinesia

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Locations(1)

Institute of Social and Preventive Medicine (ISPM), University of Bern

Bern, Switzerland

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NCT04602481


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