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Additional Clinical Initiatives

In addition to the clinical trials that are listed on the drug development pipeline, the Cystic Fibrosis Foundation actively supports other clinical research initiatives that could lead to new treatments and strategies to help people with CF better manage the disease and improve their health.


Germs 

Burkholderia cepacia complex

Burkholderia cepacia (B. cepacia) complex is a group of several species of bacteria that are resistant to many antibiotics. They can cause serious lung infections and can be spread between people with CF.

Through its Patient Registry, the CF Foundation carefully tracks the prevalence of B. cepacia in people with CF and since 2010 has done more detailed tracking of specific B. cepacia species.

The good news is that, with tighter infection control practices as recommended in the published CF Foundation guidelines, the prevalence of B. cepacia has decreased. In 2010, B. cepacia was found in 2.5 percent of people with CF, down from 3.2 percent in 2000.

The Foundation is supporting research on B. cepacia to find new ways to prevent or get rid of lung infections caused by these bacteria. Some researchers are studying whole new classes of antibiotics to fight B. cepacia.

In addition, the Foundation funds basic research aimed at identifying the differences between the several B. cepacia species. The CF Foundation supports the B. cepacia Research Laboratory and Repository at the University of Michigan, Ann Arbor, which enables scientists to learn more about how B. cepacia causes infection and identify new treatments in people with CF. The laboratory is a resource to help the CF medical community identify B. cepacia, investigate their spread and store samples for future research studies.

The Foundation also supports the International Burkholderia cepacia Working Group, which has helped spur a tremendous amount of research activity related to B. cepacia.

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Methicillin-resistant Staphylococcus aureus (MRSA)

Among the bacteria that cause lung infection, methicillin-resistant Staphylococcus aureus (MRSA) is growing more prevalent and is now found in 25 percent of people with CF. MRSA is resistant to multiple antibiotics, and lung infections caused by the bacteria often become a chronic condition.

To address this serious problem, the CF Foundation has tracked the prevalence of MRSA in people with CF for a number of years and has also tightened its infection control guidelines to limit the spread of this bacteria. The Foundation’s Patient Registry shows that some centers are beginning to successfully do so.

The Foundation is also supporting clinical studies to evaluate new therapies that could target MRSA. This work includes two separate interventional studies assessing whether it is possible to eradicate MRSA using aggressive therapy in people with CF who have recently acquired the bacteria and in those with chronic infection.

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Nontuberculous mycobacteria (NTM)

Nontuberculous mycobacteria (NTM) are another group of bacteria that can cause lung problems in people with CF; they are related to the bacteria that cause tuberculosis (TB). The CF Foundation is supporting studies to determine how common NTM are, assess their effect on people with CF and evaluate new therapies that target the bacteria.

Since 2010, the Foundation has carefully tracked NTM in its Patient Registry at the species level, and is working with researchers to identify risk factors that predispose people with CF to get NTM. Among the worst of the family of NTM bacteria is Mycobacterium abscessus, which is growing in prevalence in the general population and is very hard to treat.

To develop recommendations for screening, diagnosis and treatment of NTM, the Foundation is also convening international experts in a yearlong effort, which will lay the groundwork for future treatments of NTM lung infections.

In addition, the Foundation is supporting investigations into therapies for NTM infections in people with CF, including a study of the inhaled antibiotic Arikace. This antibiotic is able to get into the cells where NTM bacteria can hide from the body’s defenses. (Arikace is also being studied in a Phase 3 trial to treat Pseudomonas infections in people with CF.)

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Mental Health/Psychosocial Issues

Depression/Anxiety

Data from the 2010 CF Foundation Patient Registry report show that 22 percent of adults with CF have depression and more than 5 percent have an anxiety disorder. The CF Foundation recognizes the extent of psychosocial problems among people with CF and supports efforts to address the full range of health issues related to the disease.

The Foundation provided funding for the U.S. component of a large international study to identify the prevalence of depression and anxiety in people with CF. Data from this observational study, called TIDES, will be linked to data in the Foundation’s Patient Registry to investigate the relationship between psychosocial problems and other health outcomes. 

The Foundation also supports the involvement of psychologists and social workers in CF care through its grants to CF care centers and through its mentoring program for social workers.

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Adherence

Nonadherence to prescribed treatments contributes significantly to poor health outcomes and increased hospitalizations among people with CF. However, CF health care providers do not often have all the information they need to know whether their CF patients are taking or following their prescribed treatments.

The iCare study is a multicenter observational trial aimed at helping CF care teams identify and understand barriers to adherence. The study is looking at two intervention strategies to improve adherence:

  • Measuring adherence based on pharmacy refill data; and
  • Implementing a comprehensive adherence program that includes assessing knowledge of the disease and skills in performing treatment-related behaviors and overcoming barriers to adherence.

The iCare study is funded by the CF Foundation, Novartis and Genentech. The Foundation is planning to convene adherence experts to develop a robust program to measure and improve adherence in people with CF.

At the 2012 North American Cystic Fibrosis Conference, Kristin Riekert, Ph.D., an adherence expert at Johns Hopkins University School of Medicine, gave a presentation on the impact of nonadherence on the health of a person with CF and new strategies that could help improve adherence. Watch Dr. Riekert's presentation (54 mins.)

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Cystic Fibrosis-Related Diabetes (CFRD) 

CFRD is one of the most common complications of CF and typically shows up in adolescence or adulthood. More than 30 percent of people with CF ages 18 and older have CFRD.

In 2011, the CF Foundation partnered with the American Diabetes Association and the Pediatric Endocrine Society to publish guidelines on the screening, diagnosis and treatment of CFRD. In addition, the Foundation has supported the development and publication of an instruction manual to help patients and families manage CFRD. It has also organized a quality improvement collaborative focused on improving care for CFRD. Results from that work, which was completed in early 2012, will be disseminated at Foundation-accredited CF care centers.

The Foundation’s support has spurred a great deal of research on CFRD, including a large, multicenter study. The Foundation has also worked on CFRD with the National Institutes of Health (NIH) and NIH's National Institute of Diabetes and Digestive and Kidney Diseases.

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Cystic Fibrosis Liver Disease (CFLD)

Cystic Fibrosis Liver Disease (CFLD) is an uncommon complication of CF, but for some people with the disease it is a major problem that leads to liver transplantation or death. It is not fully known what factors contribute to CFLD.

In cooperation with NIH, the Foundation is supporting research to help better understand CFLD, diagnose it earlier and develop biomarkers and a therapeutic strategy to treat CFLD. This is the largest study of CFLD in the world.

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Updated 03/29/13

The Cystic Fibrosis Foundation is an accredited charity of the Better Business Bureau.