Living With Primary Ciliary Dyskinesia (Living With PCD)

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.

Conditions

• Primary Ciliary Dyskinesia

Sponsors & Collaborators

• Selbsthilfegruppe Kartagener Syndrom und Primäre Ciliäre Dyskinesie

  collaborator UNKNOWN

• Verein Kartagener Syndrom und PCD

  collaborator UNKNOWN

• PCD Support UK

  collaborator UNKNOWN

• PCD Foundation

  collaborator UNKNOWN

• PCD Australia

  collaborator UNKNOWN

• European Lung Foundation

  collaborator UNKNOWN

• University of Southampton

  collaborator OTHER

• Universität Luzern

  collaborator OTHER

• Associazione Italiana Discinesia Ciliare Primaria Sindrome di Kargagener APS

  collaborator UNKNOWN

• Asociación Nacional de Pacientes con Discinesia Ciliar Primaria

  collaborator UNKNOWN

• Association Dyskinésie Ciliaire Primitive ADCP

  collaborator UNKNOWN

• University of Bern

  lead OTHER

Principal Investigators

• Claudia E Kuehni, Prof. · University of Bern

• Myrofora Goutaki, Prof · University of Bern

Eligibility

Sex

ALL

Healthy Volunteers

No

Timeline & Regulatory

Start

2020-05-31

Primary Completion

2030-05-31

Completion

2030-05-31

Countries

• Switzerland

Study Locations