A Study to Form a Cystic Fibrosis Patient Registry


About this study

The purpose of the Cystic Fibrosis Patient Registry is to gather and maintain data on all patients with the disease so that current and accurate data can be provided to researchers and clinicians regarding practice patterns, age and gender distributions, clinical outcomes, mortality and morbidity rates, and so that epidemiologic research can be performed.


Participation eligibility

Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Contact the study team to discuss study eligibility and potential participation.

Inclusion Criteria                     

  • All individuals with Cystic Fibrosis
  • Individuals with CF related disorders (e.g., CRMS, CFTR-related disorders).

Exclusion Criteria                    

  • Pregnant women, fetuses or neonates

Participating Mayo Clinic locations

Study statuses change often. Please contact the study team for the most up-to-date information regarding possible participation.

Mayo Clinic Location Status Contact

Rochester, Minn.

Mayo Clinic principal investigator

Mark Wylam, M.D.

Closed for enrollment

Contact information:

Vicki Dean R.N.



More information


Publications are currently not available

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