Cystic Fibrosis Foundation Patient Registry
Care Centers Perspective: The Value of the CFFPR
The Cystic Fibrosis Foundation Patient Registry (CFFPR) tracks the health of individuals diagnosed with cystic fibrosis
(CF) in the United States. It provides clinicians and researchers access to a large sample of CF patient data, which
can be used to identify and study health trends, determine the most effective treatments, and design clinical trials for
potential new therapies.1
Data included in the CFFPR are populated through Care Centers – medical centers that are certified by the Cystic
Fibrosis Foundation (CF Foundation) as administering and providing care aligned with national standards. There are
more than 110 Care Centers in the United States, and each undergoes an annual review by the Foundation before it
receives continued accreditation, and thus, access to the CFFPR.2
Providers within Care Centers use the CFFPR to:
1. Inform patient visits (e.g., track symptoms over time);
2. Generate research hypotheses;
3. Identify patients for research studies; and
4. Learn best practices/guidelines.
Inform Patient Visits
Health care providers value the Registry because it helps to
inform their patient interactions. Many care providers pull
individual patient data directly from the Registry in advance of
their visit, which allows them to see individual trends and track
symptoms over time. The Registry also offers real-time analyses of their patients relative to similar cohorts contained in the
Registry.3
Generate Research Hypotheses
Many providers affiliated with Care Centers are also researchers and note that the Registry provides them with longitudinal
data needed to help generate hypotheses for their research. If an
association between a behavior or therapy and a patient outcome
(e.g., nutrition status and pulmonary function) becomes evident in the Registry, a provider can use the trend to formulate a
research question. This helps to ensure that research questions
being studied are those of relevance and importance to the CF
community.4
Identify Patients for Research Studies
The Registry can also be used by providers to easily identify potential candidates for novel treatment therapies and research studies. Doing so provides patients with access to emerging or new
care options, which is critical for patients with Cystic Fibrosis.5
Learn Best Practices/Guidelines
Finally, the Registry serves as a repository for best practices and
guidelines documentation. These resources provide easy, real-time
access to both historical and current information on the treatment
for and status of the disease in the United States, making the Registry’s Web portal a valuable resource for those in clinical practices.6
Though most Care Centers adhere to guidelines and standards,
variations persist, both in terms of the relative effectiveness of
different therapies delivered and overall provider performance.
To minimize unwanted variation, the CF Foundation launched
Learning and Leadership Collaboratives (LLC) – quality improvement programs designed to evaluate care, help staff improve care
processes, and standardize activities within all Care Centers.
2 | Cystic Fibrosis Foundation Patient Registry Care Centers Perspective: The Value of the CFFPR
Care Center Spotlight: Learning and Leadership Collaboratives
To date, the Foundation has supported 11 sequential LLCs that involve over 90 percent of the Care Centers in the United States.7 During the 12-month collaborative periods, trained CF Foundation staff convene Care Center representatives to share best practices, challenges, and serve as improvement coaches for
their peers. Specific activities include: face-to-face learning sessions, monthly learning session conference calls, email-based listserv messaging and utilization
of quality improvement toolkits. At the start of the Collaborative, each Center receives information on its performance across key domains such as nutrition, coordination of clinical visits, and pulmonary care. Centers are able to track their improvement over the 12-month process through the CFFPR. With the Registry,
the Foundation gains access to data on specific Centers that are then used to inform future LLCs and quality improvement initiatives.8
Collaborative: Akron Children’s Hospital
Many Centers cite their individual quality improvements due
to participation in these collaboratives. One such Center is the
Lewis H. Walker, M.D., Cystic Fibrosis Center at Akron Children’s
Hospital in Ohio. The Center realized that providers within their
system had differing opinions on when a patient is sick enough
to start receiving CF treatment. To bring more of a systematic approach to this determination, the quality improvement team decided to standardize provider practice by developing criteria (e.g.,
cough, shortness of breath, weight loss) and a uniform scoring
system to be used by providers when making treatment decisions.
If a certain percentage of criteria are met, providers recommend
the patient for treatment. Due to the success of this standardization process, the Akron Care Center presented its approach at an
LLC meeting and volunteered to work with other Centers looking
to advance uniform practice among providers. Other Centers are
now using the scoring system, including the Children’s Hospital
and Regional Medical Center in Seattle and the Women and Children’s Hospital of Buffalo.9
Citations
1
Cystic Fibrosis Foundation, Patient Registry Report, available
at: http://www.cff.org/livingwithcf/qualityimprovement/patientregistryreport/. Accessed October 3, 2014.
2
Key informant interview, Summer 2014.
3
Ibid.
4
Ibid.
5
Ibid.
6
Ibid.
Godfrey, M. et al. “Accelerating the rate of improvement in
cystic fibrosis care: contributions and insights of the learning
and leadership collaborative,” BMJ Quality and Safety, Vol. 23:
i23-i32, September 2014.
7
Britton, L. et al. “Creating a Culture of Improvement: Experience of a Pediatric Cystic Fibrosis Center,” Journal of Nursing
Care Quality, Vol. 23, No. 2: 115-120, 2008.
8
Cystic Fibrosis Foundation, New Strategies Improve Patient
Care, available at: http://www.cff.org/ecommitment/2007_fall/
science_news_and_foundation_notes/features/new_strategies.
html. Accessed October 6, 2014.
9
About the Authors
Jessica Winkler, M.P.H. is a senior associate at AcademyHealth.
She can be reached at Jessica.Winkler@academyhealth.org.
Acknowledgements
Sponsorship for this project was provided by the Kaiser Permanente Institute for Health Policy. A special thank you to our partners at The Pew Charitable Trusts and all those interviewed for
their contributions to this product. A special thank you to Bruce
Marshall, Erin Moore, Aliza Fink, Craig Lapin, Michael Schechter,
Kathryn Sabadosa and other registry staff for their review and
assistance.
This document represents a synthesis of information generated by a series of key informant interviews. Any views expressed are those of the interviewees.