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To Your Health: NLM update Transcript

Cystic fibrosis research institute's potential: 11/07/2016

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Greetings from the National Library of Medicine and MedlinePlus.gov

Regards to all our listeners!

I'm Rob Logan, Ph.D., senior staff, U.S. National Library of Medicine (NLM).

Here is what's new this week in To Your Health - a consumer health oriented podcast from NLM - that helps you use MedlinePlus to follow up on weekly topics.

The Cystic Fibrosis Foundation just opened its own research institute to speed the development of medications in a move that will be watched by other disease advocacy organizations, finds a recent article published in Science.

Science explains the new cystic fibrosis (or CF) research foundation and lab hope to create an array of results that can be shared instantly with other researchers. Science reports the intent is to accelerate the process to share findings (and the underlying information needed to generate them) by removing the barriers to data sharing created by utilizing university-based researchers.

Science writes (and we quote): 'Frustration with academic technology transfer agreements was a key motivation... University-based researchers funded by the (CF) foundation have to seek approval from their institution's legal department before sharing assays, cells, or any intellectual property, a hurdle that can a year to negotiate' (end of quote).

Science notes the delays in CF research data sharing apply to many other diseases and conditions, which is the reason the creation of a private research center (with the intent to accelerate data sharing processes) will be watched with interest by other disease advocacy groups.

Science reports this is not the first time the Cystic Fibrosis Foundation (CFF) has broken new ground among disease advocacy organizations. In the absence of progress in treating CF, at the turn of the millennium Science reports CFF hired a private biotechnology company to develop novel treatments for cystic fibrosis.

Science adds some of the revenues generated by two medications, which were funded by CFF within the past 15 years, will be used to support and sustain the new, private cystic fibrosis research lab.

Regarding CFF's new efforts Science notes (and we quote): 'its research is potentially critical because although the two recent drugs are game changers for some with CF, neither cures the disease, and they help only about half of all CF patients' (end of quote).

In addition, Science explains the two recently developed drugs are expensive -- and more effective, expansive, and cheaper therapies are needed to treat CF patients.

MedlinePlus.gov explains cystic fibrosis is an inherited disease of the mucus and sweat glands. Some of the mucus that accumulates in cystic fibrosis patients can clog lungs, which results in breathing problems and the growth of unhealthy bacteria. Science reports about 30,000 Americans have cystic fibrosis and 467 persons died from CF in 2014.

Meanwhile, CFF provides basic information about cystic fibrosis in a link within the 'start here' section of MedlinePlus.gov's cystic fibrosis health topic page. CFF also provides information about the treatment of cystic fibrosis, which includes available medications, within the 'treatment and therapies' section of MedlinePlus.gov's cystic fibrosis health topic page.

MedlinePlus.gov's cystic fibrosis health topic page provides links to the latest pertinent journal research articles, which are available in the 'journal articles' section. Links to relevant clinical trials that may be occurring in your area are available within the 'clinical trials' section. You can sign up to receive updates about cystic fibrosis as they become available on MedlinePlus.gov.

To find MedlinePlus.gov's cystic fibrosis health topic page, please type 'cystic fibrosis' in the search box on MedlinePlus.gov's home page, then, click on 'cystic fibrosis (National Library of Medicine).' MedlinePlus.gov also has health topic pages devoted to pulmonary rehabilitation.

As Science notes, the CFF's efforts (if successful) will be watched carefully by other disease advocacy organizations and could lead to changes in how research is accelerated and hosted. In short, this is one effort we plan to watch.

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