A Study to Form a Cystic Fibrosis Patient Registry

Overview

  • Study type

    Observational
  • Study IDs

  • Describes the nature of a clinical study. Types include:

    • Observational study — observes people and measures outcomes without affecting results.
    • Interventional study (clinical trial) — studies new tests, treatments, drugs, surgical procedures or devices.
    • Medical records research — uses historical information collected from medical records of large groups of people to study how diseases progress and which treatments and surgeries work best.
  • Site IRB
    • Rochester, Minnesota: 14-005078
    Sponsor Protocol Number: 14-005078

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. If you need assistance understanding the eligibility criteria, please contact the study team.

See eligibility criteria

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 us for help.

Mayo Clinic Location Status Contact

Rochester, Minn.

Mayo Clinic principal investigator

Mark Wylam, M.D.

Closed for enrollment

Contact information:

Vicki Dean R.N.

(507)293-3571

dean.vicki@mayo.edu