Research Program

The Minnesota Cystic Fibrosis Center considers research to be the key to maintaining and improving the quality of care and teaching concerning CF. 

The mission of The Minnesota CF Center has included the undertaking of high-quality research since its inception in 1961. This Center coordinates the clinical care and research participation of over 500 patients and has become a major resource in the Upper Midwest. This Center distinguishes itself as a world leader in the study of metabolic derangements in CF such as CF related Diabetes (CFRD). Also, thanks to the activities of The Minnesota CF Database, this Center has a well-established reputation for the study of longitudinal outcomes in CF with a number of groundbreaking epidemiological studies on record. Current Clinical Research efforts are primarily focused on the metabolic aspects of CF and the longitudinal evaluation of health outcomes. This includes NIH and CF Foundation funded multicenter and local studies of CFRD therapy and complications, effects of chronic steroid use and studies on the effects of sex hormones on the health of women with CF. Longitudinal studies on the relationship between nutrition and pulmonary function in children with CF are being conducted and with particular interest on the role of oxidant damage in the lungs of these patients. The great majority of these studies have been or are currently being conducted at the University of Minnesota’s General Clinical Research Center (GCRC). A long-standing relationship with the GCRC has led to a seamless implementation process for CF studies, since the GCRC personnel is both familiar and enthusiastic about CF research.

All patients and families who participate in the activities of The Minnesota CF Center are presented with the "Cystic Fibrosis Center Participation Form”. This form outlines the goals of the CF Center Program and defines the responsibilities of the CF Center staff and of the CF patients and families working together to conquer CF.  The participation of CF patients in the activities of the CF Center program has counted with IRB approval since 1975 and is reviewed on a yearly basis. It is currently one of the longest continuously running IRB approved programs at our institution. We believe the loyalty of our patients, their families and friends, and their collaboration on CF research is an important part of our successful treatment program.  All clinical research studies receive approval from the Institutional Review Board before research activities start.

The Minnesota Cystic Fibrosis Care, Research and Teaching Center remains enthusiastic for future collaboration of CF patients and their families with the CF Center team in CF research for the improvement of the prognosis for a healthy and longer survival of patients with cystic fibrosis.

Our Current research programs include both clinical and basic science activities:

• CF Therapeutics Development Network (CFTDN) Participating Center
• Core Center Activities
• • Induced sputum procurement + processing
  • Infant PFT testing
  • Nasal Potential Difference (NPD) testing
  • Genomics
  • Proteomics
• Research Programs: Basic Science
• • Airway Clearance Science
  • Animal CF models
  • Cell and Molecular CFTR Biology
  • Molecular Genetics:
  • • Gene Disruption
    • Gene Repair
• The Minnesota Cystic Fibrosis Database
• • This epidemiologic study has been running continuously since 1975 and has been the source for several important studies including our longitudinal studies on CFRD.

Why is research necessary?

There are many medical treatment questions that can only be answered in scientific studies. The best treatments are not the opinion of one person but the work of many people to ensure that there is verification of what works and what doesn't work, and what problems may be associated with the treatments. This may require thousands of patients or may require fewer than 100.

Why do patients need to participate?

Basic science or animal research may suggest what a human response may be, but it is never assured until humans are studied.

Current Research Studies

To inquire about participation in a research study contact:
Brooke Noren, BSN, Clinical Research Nurse Coordinator at 612-625-7995

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Understanding the Clinical Research Process

Types of Clinical Trials

• Randomized: Treatment assigned is selected in a random fashion (by chance, like tossing a coin)
• Double-Blind: neither the patient nor the investigators team knows who is getting what treatment
• Placebo-controlled: one group gets an inactive treatment and one (or more) group gets the real treatment under test

Why these types of studies?

• Results most accurate and specific to the question at hand
• Safety of the treatment under study can be best established
• Efficacy can be best assessed
• Research community standard
• Controls for any potential bias

How is a Study put together?

• Rationale and Purpose of study clearly stated
• Who can and cannot participate
• Detailed description of what will be done
• Safety built in into the protocol
• Detailed routine to be followed by each patient
• Rules for stopping a patient's participation and the study

Informed Consent Process

• Detailed explanation of what to expect
• Procedures to be performed and length of participation clearly delineated
• Discussion of possible risks and benefits
• Safety is underscored throughout
• Helps patient understand rights as a research participant
• Offers chance to ask Questions and have them answered

How is Safety Ensured?

• Most protocols undergo rigorous peer review
• Investigators have to be trained in how to protect patients
• Review and approval by Institutional Review Board required
• Data and Safety Monitoring Board established for the study

CF Research as Teamwork

• Partnership with Patients and Families
• Strive for the highest quality
• Stress safety as a priority
• Advocate for research at the local and national level
• Actively participate in one way or another

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