Viability and Impact To fund and create the PFF Patient Registry and Care Center Network, the PFF is establishing partnerships with clinicians, researchers, government agencies, and bio-pharma organizations. This initiative is central to the Foundation’s mission: it will increase research efforts to develop effective treatments; will improve disease awareness through expanded and consistent patient education; will enhance advocacy through a national, collaborative network; and will improve the quality of care for patients and caregivers by developing standardized “best practices” diagnostic and treatment protocols. The PFF, the patient care centers, and the research community all view the creation of a Registry/CNN as a vital and critical component in the goal of improving the care of PF patients and developing better and more effective therapies.
Robert J. Beall, PhD, President and CEO of the Cystic Fibrosis Foundation, will be the keynote speaker at the PFF Summit 2013. To learn more about the Summit, turn to page 17 or visit www.pffsummit.org.
WHAT ARE THE REQUIREMENTS FOR A PF CARE CENTER? The participating institution must meet certain standards
The Care Center must have the appropriate outpatient
that have been developed by the Foundation and Registry/
and inpatient facilities, essential consultative personnel
CCN Oversight Committee.
(i.e., rheumatologist, dermatologist, radiologist), the ability
These requirements include a “care team” comprised of a medical director, clinic coordinator/nurse specialist, social worker, respiratory therapist, and research coordinator.
to perform necessary diagnostic procedures, and the ability provide adequate follow-up care. Additionally, the Care Centers should participate in research and encourage enrollment in clinical trials.
Sources: 1. National Institutes of Health, Office of Rare Diseases Research. “Rare Diseases and Related Terms.” Accessed March 27, 2013, http://rarediseases.info.nih.gov/RareDiseaseList.aspx?PageID=1. 2. Raghu G, Weycker D, Edelsberg J, Bradford WZ, Oster G. “Incidence and prevalence of idiopathic pulmonary fibrosis.” Am J Respir Crit Care Med 2006;174:810–816. 3. National Institutes of Health, Office of Rare Diseases Research. “Why Rare Disease Registries.” Accessed April 6, 2013, http://www.grdr.info/index.php?option=com_content&view=article&id=6&Itemid=113. 4. Ibid. 5. National Committee on Vital and Health Statistics. Accessed March 27, 2013, http://ncvhs.hhs.gov/9701138b.htm. 6. Cystic Fibrosis Foundation. Accessed March 27, 2013, http://www.cff.org/research/ResearchMilestones/.
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