Tools & Resources

Tools & Resources for Researchers

We support the development of many helpful tools and resources to assist you in accelerating the progress toward new scientific knowledge of and new therapies for cystic fibrosis.
Patient Registry

We collect information on the health status of people with CF who receive care in CF Foundation-accredited care centers and agree to participate in the Registry. This information is used to create CF care guidelines, assist care teams providing care to individuals with CF, and guide quality improvement at care centers. Researchers also use the Registry to study CF treatments and outcomes and to design CF clinical trials.

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Getting Community Input

Partnering with the community is essential to ensure that research has the greatest impact on those living with CF. We can help you engage people with CF so that you can incorporate their voices into your decision-making processes throughout your work.

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Antimicrobial Tools and Resources

Access to antimicrobial tools can aid researchers in the discovery of new anti-infective treatments for cystic fibrosis.

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Whole Genome Sequencing Project Data Requests

The Cystic Fibrosis Foundation’s Whole Genome Sequencing (WGS) project contains WGS data from over 5,000 people with cystic fibrosis in the United States that is linked with data from the CF Foundation Patient Registry.

6 min read

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Patient-Centered Outcomes Research Training Manual for the CF Research Community

The patient-centered outcomes research (PCOR) training manual provides discrete steps, tools, and resources that CF Center research teams can take to integrate and maintain patient/caregiver-partners in CF research.

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Cell Model Resources

Cell models have been critical to enhancing our understanding of the physiological, biochemical, and genetic mechanisms underlying cystic fibrosis and to developing therapeutic strategies. The Cystic Fibrosis Foundation provides funding and support to make several cell model systems available to researchers.

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CFTR Assays

Various assays for measuring cystic fibrosis transmembrane conductance regulator (CFTR) ion channel activity, as well as its stability in the membrane, can be used for basic research and drug discovery efforts.

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CF Foundation Biorepository

Cystic fibrosis biological samples are available to qualified researchers to help develop promising new studies that will support CF research and aid in drug development and drug discovery.

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Patient Registry Data Requests

The Patient Registry is an invaluable tool for researchers conducting observational studies about people with CF in the U.S. About 50,000 individuals have been followed in the Registry since its inception in 1986; many of them have been included for over 20 years.

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CFTR Antibodies Distribution Program

The CFTR Antibodies Distribution Program works to streamline access to reagents specific for the detection of cystic fibrosis transmembrane conductance regulator (CFTR) expression.

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CFTR Proteins

Knowledge of cystic fibrosis transmembrane conductance regulator (CFTR) protein structure will contribute toward the understanding of CFTR function and CF biology, the mechanisms of action for CF drugs, and provide additional insight toward new drug discovery through structure-based drug design.

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CFTR Chemical Compound Program

The goal of the CFTR Chemical Compound program is to enable cystic fibrosis research scientists to test known cystic fibrosis transmembrane conductance regulator (CFTR) modulating compounds in different functional assays.

2 min read