PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = 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

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = OUTLINE Brief CCN/Registry Overview Interactive Panel & Audience Discussion 2

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = CCN Overview

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = 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.

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = – 9 SITES CONFIDENTIAL

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = – 21 SITES CONFIDENTIAL

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = – 40 SITES CONFIDENTIAL

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = 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 8

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = Patient Registry

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = 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).

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = TYPES OF RESEARCH Registry vs. Clinical studies RegistryClinical ObservationalInvestigational 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

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = 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 ResponsesClinic visits Hospitalizations Lung transplant or listing Acute deterioration Hospice care Death Optional: blood for DNA, RNA, plasma, and serum

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = 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

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = 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 Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = 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 15

PFF Teal = MAIN COLORS PFF Green = Light Green = Red = HIGHLIGHT COLORS Light Grey = Dark Grey = Black = LEVERAGING THE PFF CARE CENTER NETWORK - PURPOSE & GOALS 16 PFF CCN Patients & Caregivers Academic Research Government Industry