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
• n a particular medication or technology
• Patient Registry database focused on patient

reported outcomes

THANK YOU

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