UNDERSTANDING THE BURDEN OF ILLNESS: CULTIVATING BEST PRACTICES IN - PowerPoint PPT Presentation

UNDERSTANDING THE BURDEN OF ILLNESS: CULTIVATING BEST PRACTICES IN PATIENT EVIDENCE Mary Sunderland, PhD, MSc Director, Research and Education Foundation Fighting Blindness msunderland@ffb.ca 416.360.4200 ext. 238

DISCLOSURE I have the following relevant financial relationships to disclose: ​ ​ The majority of financial support for the Foundation Fighting Blindness comes from individual donors. ​ ​ Advisory Boards: ProQR, Novartis Support through unrestricted grants and/or sponsorships comes from: AGTC, Allergan, Bayer, BMO, CIBC, Glaukos, I-MED Pharma, MEDEC, MeiraGTx, Novartis, RBC Foundation, Shire, Spark Therapeutics, Specialty Pharma Solutions

OVERVIEW • Foundation Fighting Blindness - from research to treatments • Collaboration is essential • Canadian burden of illness studies • Towards a Canadian Eye Disease Patient Registry

FOUNDATION FIGHTING BLINDNESS • Fund vision research with the goal of accelerating the development of new treatments • $33+ million invested in vision research • Tremendous research progress – requires policy innovation • Our goal is to accelerate the development and availability of sight-saving treatments • Cultivating best practices in patient evidence is necessary to realize our mission

COLLABORATION IS ESSENTIAL • The kinds of translational research projects funded by the FFB are collaborative and interdisciplinary • Vision Quest education conference series brings together diverse stakeholders • All of our patient evidence submissions are done in collaboration with CNIB and CCB

CANADIAN BURDEN OF ILLNESS STUDIES • Contribute substantive data about the patient experience in Canada • Canadian data is missing and needed • Our goal is to conduct burden of illness studies about the different eye diseases impacting Canadians • We aim to publish these studies to verify the high-quality data

EYE DISEASES AND BLINDNESS IN CANADA • 5.5 million Canadians are living with eye conditions that put them at serious risk of going blind. • 1 in 7 Canadians will develop a serious eye disease in their lifetime. • As of 2017, 1,519,840 Canadians were living with a seeing disability. • By 2032, vision loss is projected to cost Canadian taxpayers $30.3 billion. • As Canada’s population ages, the number of people living with vision loss is projected to double.

CANADIAN EYE DISEASE PATIENT REGISTRY • FFB-Canada Inherited Retinal Disease (IRD)Patient Registry established in 2004 • 1200+ patients enrolled at 4 enrolment sites (IWK; SickKids; Royal Alexander; UBC) • Improve patient care • Demonstrate/assess capacity to conduct clinical trials • Key information about patient population to inform how/when new treatments make their way into Canada • How can/should we expand this resource to better curate patient evidence data for all eye diseases?

CONCLUSIONS Best Practices in Patient Evidence:  Collaboration is key  Burden of illness studies that are not focused on a particular medication or technology  Patient Registry database focused on patient reported outcomes

THANK YOU Mary Sunderland 416-360-4200 x238 msunderland@ffb.ca