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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Cystic fibrosis


Other Names for this Disease
  • CF
  • Mucoviscidosis
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Research


Clinical Trials & Research for this Disease

  • The Childhood Liver Disease Research and Education Network (ChiLDREN) is a team of doctors, nurses, research coordinators, and research labs throughout the U.S., working together to improve the lives of people with rare liver diseases through research. Current studies are enrolling people with Alagille syndrome, alpha one-antitrypsin deficiency, bile acid synthesis defects, biliary atresia, cystic fibrosis liver disease, idiopathic neonatal hepatitis, mitochondrial hepatopathies, and progressive familial intrahepatic cholestasis. Click on the link above to learn more.

    Visit the following link to find the participating research center nearest you.
    http://childrennetwork.org/centers.html

  • ClinicalTrials.gov lists trials that are studying or have studied Cystic fibrosis. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
  • The Cystic Fibrosis Research Program is funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) to support investigator-initiated research grants encompassing both fundamental and clinical studies of the etiology, molecular pathogenesis, pathophysiology, diagnosis, and treatment of cystic fibrosis and its complications.

Patient Registry

  • The Cystic Fibrosis Foundation started a national patient registry to track the health of people with cystic fibrosis (CF) across the United States. The patient registry report tracks the health of more than 23,000 CF patients who receive care at a CF Foundation-accredited care center.The type of information collected includes state of residence, height, weight, gender, genotype, pulmonary function test results, pancreatic enzyme use, length of hospitalizations, home IVs, and complications related to CF. Click on the Cystic Fibrosis Foundation link to read more.
  • ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.

General Clinical Trials & Research

  • NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate.