Cystic Fibrosis

Common Name(s)

Cystic Fibrosis

Cystic fibrosis (CF) is an inherited condition that causes mucus to build up and clog some of the organs in the body, particularly in the lungs and pancreas. When mucus clogs the lungs, it can make breathing very difficult. The thick mucus also causes bacteria to get stuck in the airways, which causes inflammation and infections. These infections can cause chronic coughing, and wheezing. Over time, mucus buildup and infections can lead to permanent lung damage, including the formation of scar tissue (fibrosis) and cysts in the lungs. Mucus can also block the digestive tract and pancreas, leading to digestive problems. CF is caused by mutations in the CFTR gene and is inherited in an autosomal recessive fashion.
 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Cystic Fibrosis" for support, advocacy or research.

Boomer Esiason Foundation

The Boomer Esiason Foundation is a dynamic partnership of leaders in the medical and business communities joining with a committed core of volunteers to heighten awareness, education and quality of life for those affected by cystic fibrosis, while providing financial support to research aimed at finding a cure.

http://www.esiason.org

Last Updated: 15 Feb 2013

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Center for Jewish Genetics

The Center is dedicated to gathering and disseminating knowledge about Jewish genetic disorders and hereditary cancers. Its mission is to educate and serve health care professionals, clergy and the Jewish community.

http://www.jewishgenetics.org

Last Updated: 26 Dec 2012

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Cystic Fibrosis Foundation

Our mission is to assure the development of the means to cure and control Cystic Fibrosis and to improve the quality of life for those with the disease.

http://www.cff.org

Last Updated: 19 Mar 2013

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Cystic Fibrosis Research, Inc.

Cystic Fibrosis Research, Inc. exists to fund research, to provide educational and personal support and to spread awareness of cystic fibrosis, a life-threatening genetic disease.

http://www.cfri.org

Last Updated: 5 Mar 2013

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General Support Organizations

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How do you compare to others with this condition?

Privately answer questions about your health. Let resources, you select, come to you.

Anonymously share and see how your answers compare with others with this condition while privately providing key pieces of information to medical researchers, disease advocacy groups, and others ONLY YOU select to help speed up cures and better alternatives.

 
 

Advocacy and Support Organizations

 

Condition Specific Organizations

Following organizations serve the condition "Cystic Fibrosis" for support, advocacy or research.

Boomer Esiason Foundation

The Boomer Esiason Foundation is a dynamic partnership of leaders in the medical and business communities joining with a committed core of volunteers to heighten awareness, education and quality of life for those affected by cystic fibrosis, while providing financial support to research aimed at finding a cure.

http://www.esiason.org

Last Updated: 15 Feb 2013

View Details
Center for Jewish Genetics

The Center is dedicated to gathering and disseminating knowledge about Jewish genetic disorders and hereditary cancers. Its mission is to educate and serve health care professionals, clergy and the Jewish community.

http://www.jewishgenetics.org

Last Updated: 26 Dec 2012

View Details
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Cystic Fibrosis Foundation

Our mission is to assure the development of the means to cure and control Cystic Fibrosis and to improve the quality of life for those with the disease.

http://www.cff.org

Last Updated: 19 Mar 2013

View Details
Cystic Fibrosis Research, Inc.

Cystic Fibrosis Research, Inc. exists to fund research, to provide educational and personal support and to spread awareness of cystic fibrosis, a life-threatening genetic disease.

http://www.cfri.org

Last Updated: 5 Mar 2013

View Details

 

General Support Organizations

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General Resources

CF in the Classroom (English and Spanish)

A guide/manuel for parents, teachers, school administrators, and the healthcare team.

Updated 19 Oct 2012

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CFRI newsletter

Newsletter issued 3 times a year, addressing CF education, research, inspiration, and new information on medications and therapies.

Updated 19 Oct 2012

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Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Cystic Fibrosis" returned 4259 free, full-text research articles on human participants. First 3 results:

Polymorphisms in the glutathione pathway modulate cystic fibrosis severity: a cross-sectional study.
 

Author(s): Fernando Augusto de Lima Marson, Carmen Silvia Bertuzzo, Antonio Fernando Ribeiro, Jose Dirceu Ribeiro

Journal:

 

Cystic fibrosis (CF) clinically manifests with various levels of severity, which are thought to be modulated by mutations in the cystic fibrosis transmembrane conductance regulator gene (CFTR), modifier genes, and the environment. This study verified whether polymorphisms in modifier ...

Last Updated: 12 Mar 2014

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The effect of social deprivation on clinical outcomes and the use of treatments in the UK cystic fibrosis population: a longitudinal study.
 

Author(s): David C Taylor-Robinson, Rosalind L Smyth, Peter J Diggle, Margaret Whitehead

Journal: Lancet Respir Med. 2013 Apr;1(2):121-8.

 

Poorer socioeconomic circumstances have been linked with worse outcomes in cystic fibrosis. We assessed whether a relation exists between social deprivation and individual's clinical and health-care outcomes.

Last Updated: 16 Jan 2014

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Aquagenic wrinkling of the palms in a patient with cystic fibrosis.
 

Author(s): Hartmut Grasemann, Felix Ratjen, Melinda Solomon

Journal: N. Engl. J. Med.. 2013 Dec;369(24):2362-3.

 

Last Updated: 16 Dec 2013

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Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Cystic Fibrosis" returned 422 free, full-text review articles on human participants. First 3 results:

Treatment of pulmonary exacerbations in cystic fibrosis.
 

Author(s): Jayesh M Bhatt

Journal: Eur Respir Rev. 2013 Sep;22(129):205-16.

 

Pulmonary exacerbations have very important consequences in cystic fibrosis (CF), both in terms of current morbidity as well as implications for long term morbidity and mortality. Even though there is no universally agreed definition of pulmonary exacerbation, prompt and aggressive ...

Last Updated: 2 Sep 2013

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Transepithelial nasal potential difference (NPD) measurements in cystic fibrosis (CF).
 

Author(s): Dorota Sands

Journal: Med Wieku Rozwoj. ;17(1):13-7.

 

The main underlying physiologic abnormality in cystic fibrosis (CF) is dysfunction of the CF transmembrane conductance regulator (CFTR), which results in abnormal transport of sodium and chloride across epithelial surfaces. CFTR function could be tested in vivo using measurements ...

Last Updated: 10 Jun 2013

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Respiratory Care year in review 2012: invasive mechanical ventilation, noninvasive ventilation, and cystic fibrosis.
 

Author(s): Richard H Kallet, Teresa A Volsko, Dean R Hess

Journal: Respir Care. 2013 Apr;58(4):702-11.

 

For the busy clinician, educator, or manager, it is becoming an increasing challenge to filter the literature to what is relevant to one's practice and then update one's practice based on the current evidence. The purpose of this paper is to review the recent literature related to ...

Last Updated: 8 Apr 2013

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Clinical Trial Information This information is provided by ClinicalTrials.gov

Metabolic Efficiency of Combined Pancreatic Islet and Lung Transplant for the Treatment of End-Stage Cystic Fibrosis
 

Status: Not yet recruiting

Condition Summary: Cystic Fibrosis; Diabetes Related Cystic Fibrosis

 

Last Updated: 5 Mar 2012

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Ivacaftor (Kalydeco) and Insulin in Cystic Fibrosis (CF)
 

Status: Recruiting

Condition Summary: Cystic Fibrosis Related Diabetes; Cystic Fibrosis

 

Last Updated: 17 Jan 2014

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Pilot Observational Study to Determine Feasibility of a Standardized Treatment of Pulmonary Exacerb. in Patients With CF
 

Status: Recruiting

Condition Summary: Cystic Fibrosis; Lung Infection; Cystic Fibrosis Pulmonary Exacerbation

 

Last Updated: 7 Apr 2014

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