Download view slides - PFF Summit 2017

PLENARY SESSION
LEVERAGING THE
PFF CARE CENTER NETWORK
Leaders: Vincent Cottin MD PhD,
Jesse Roman MD, Kevin Flaherty MD, MS
Panel: Jerry Eu MD, Pat Furlong,
Dave Sherry, John Morthanos
NOVEMBER 14, 2015
OUTLINE
• Brief CCN/Registry Overview
• Interactive Panel & Audience Discussion
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CCN Overview
PFF CARE CENTER NETWORK
The PFF Care Center Network (CCN) is a growing group of
medical centers nationwide with:
– Experience and expertise in treating patients with fibrotic lung
diseases
– A dedication to improving the clinical care of those living with
this disease.
PFF CCN sites provide:
– Experts to fully manage each patient’s disease
– A multidisciplinary approach to care
– Engagement opportunities for patients, caregivers and family
members to actively learn from and connect with others
impacted by the disease.
2013 – 9 SITES
CONFIDENTIAL
2014 – 21 SITES
CONFIDENTIAL
2015 – 40 SITES
CONFIDENTIAL
CCN SITE SELECTION
• Provide excellent patient care
– Established ILD Program
– Specialty Consult Services, Diagnostic Testing, Social Work,
Palliative Care, Pulmonary Rehab, Sleep Studies, Lung
Transplant
• Educate students, residents, fellows, HCPs, and allied
health care professionals about Pulmonary Fibrosis
• Actively Engaged in Pulmonary Fibrosis Research
• Pulmonary Fibrosis Support Group
• Willingness to participate in PFF Signature Programs
• Willingness to partner with the PFF and other CCN
Centers to change the landscape of pulmonary fibrosis
Care & Research
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Patient Registry
WHAT IS A REGISTRY
A registry is a collection of information about
individuals, usually focused around a specific
diagnosis or condition.
The PFF Registry will collect data on patients with nearly all
types of pulmonary fibrosis (PF).
TYPES OF RESEARCH
Registry vs. Clinical studies
Registry
Clinical
Observational
Investigational
Watches a group of people in “real
world” setting to learn what occurs
Looks at the effect of a therapy in a
specific group of people
Strengths
• Can typically observe for longer
periods
• Learn about actual care patterns
• Often allows wider breadth of
population observed
• Typically less expensive
Strengths
• Can be strictly controlled, allowing
greater precision
• Can measure effect of specific
therapy
• Randomization can limit potential
selection bias
Weaknesses
• May include biases (e.g. selection)
that could affect results
Weaknesses
• May not reflect how patients
respond in actual care settings
WHAT ARE WE COLLECTING IN
OURS?
Patient demographics
Smoking history
Family ILD history
Diagnosis and process
Co-morbid conditions
Medications
Lab results
Test results
HRCT images
PRO Responses
Optional: blood for DNA,
RNA, plasma, and serum
Clinic visits
Hospitalizations
Lung transplant or listing
Acute deterioration
Hospice care
Death
SCOPE OF THE REGISTRY
• Plan to include all CCN sites (40 US wide)
• Initial enrollment goal of 2,000 patients
– Targeting 60% IPF patients
• No limit on time from diagnosis
• Patients will be followed for life
WHY IS OURS SO IMPORTANT?
• Nationwide coverage allows study of geographic
influences
• Large number of sites lets us study multiple center care
patterns and how these affect patient outcomes
• Includes a wide range of ILDs so researchers can explore
rarer and less studied diseases
• Large size provides a robust data set for analysis
PFF CARE CENTER NETWORK
ACCOMPLISHMENTS
• Participate in PFF Signature Programs
–
–
–
–
–
PFF Patient Communication Center
PFF Ambassador Program
PFF Support Group Leader Network
PFF Disease Education Webinar Series
PFF Summit
• Development of Registry/Biorepository Protocol
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LEVERAGING THE PFF CARE CENTER
NETWORK - PURPOSE & GOALS
Patients &
Caregivers
Industry
PFF
CCN
Academic
Research
Government
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