BEAT-PCD supported research projects
For a rare disease such as PCD, international collaboration is essential to improve diagnosis and care. Therefore, BEAT-PCD supports international collaborative projects that aim to fill knowledge gaps and and answer important questions for PCD research.
Research surveys
We have a number of important collaborations which are currently running surveys. All three projects have been selected as important in the advancement of PCD research and services worldwide and we would appreciate your efforts to complete all 3 if possible. The surveys ask for information about current PCD diagnosis and care in your centre for the following purposes (click on the appropriate topic):
Genetic testing strategies to inform the impact of results of the ClinGen gene panel project.
Diagnostic test availability to inform the joint ERS/ATS PCD diagnostic guideline
Follow up to previous BEATPCD project to assess improvement in PCD Services - please download the instructions and documents for survey 3# here.
For additional information for each project, check the list below:
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Principal Investigator: Myrofora Goutaki
Contact Person: Vasiliki Gkatzou
Prospective clinical cohort study focusing on the upper airways
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Principal Investigator: Claudia Kuehni
Project leader: Myrofora Goutaki
Contact Person: Andrea Fernandez Rodriguez
Patients participate directly by joining the study through the website. Feel free to share the link with any person with PCD that could be interested: https://pcd.ispm.ch/en/ (Available in English, German, French, Italian and Spanish).
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BEAT-PCD work package2 have partnered with ClinGen to curate motile ciliopathy genes. We are looking for biocurators with an interest in genetics to get involved. Applications can be made here: ClinGen Community Curation (C3)
Contact person: Susan Crowley
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BEAT-PCD are launching a new biobank project 'complete:PCD'. If you see patients with PCD and are interested to receive more information or to take part please complete this short survey
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Principal Investigator: Eric G. Haarman, Kim G. Nielsen, June K Marthin, Heymut Omran
Contact Person: June K Marthin
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Principal Investigator: Panayiotis Yiallouros Kim G. Nielsen, Heymut Omran
Contact Person: Panayiotis Kouis
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Principal Investigator: Panayiotis Yiallouros, Kim G. Nielsen, Heymut Omran
Contact Person: Pinelopi Anagnostopoulou
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If you would like your project to be supported by BEAT-PCD please contact BEAT-PCD team.
