Cystic Fibrosis Patient Registry


About this study

The goal of the Cystic Fibrosis (CF) Patient Registry, the ongoing data collection effort sponsored by the Cystic Fibrosis Foundation, is to collect data on individuals with Cystic Fibrosis (CF) or individuals with Cystic Fibrosis (CF) related disorders (e.g., CFTR-related metabolic syndrome (CRMS), CFTR-related disorders).

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 (CF) or individuals with CF related disorders (e.g., CRMS, CFTR-related disorders)

Exclusion Criteria:                 

  • Pregnant woman, 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-enrolling by invitation

What is this? (?)
Not open to everyone who meets the eligibility criteria, but only those invited to participate by the study team.

Contact information:

Vicki Dean R.N.

(507) 293-3571

More information


Publications are currently not available

Study Results Summary

Not yet available

Supplemental Study Information

Not yet available