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Advisory Panel on Rare Disease (RDAP) Virtual Meeting: Winter 2020

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Advisory Panel on Rare Disease (RDAP) Virtual Meeting: Winter 2020 Advisory Panel on Rare Disease (RDAP) Virtual Meeting: Winter 2020 December 16, 2020 Nora McGhee, PhD Scott Berns, MD, MPH, FAAP Senior Program Officer, HDDR Chair, RDAP Staff Co-Chair, RDAP Doug Lindsay, BS Carly Khan, PhD, MPH, RN Co-Chair, RDAP Program Officer, HDDR Staff Co-Chair, RDAP Rohini Mohanraj, MHA Program Associate, Research Infrastructure Panel Coordinator, RDAP RDAP Chairs Scott Berns, MD, MPH Doug Lindsay, BS Chair, Advisory Panel on Rare Disease Co-Chair, Advisory Panel on Rare Disease Chief Executive Officer, National Personal Medical Consultant and Founder Institute for Children’s Health Quality of Doug Says LLC. 2 Housekeeping • Please note that today’s webinar is being recorded for posting on PCORI’s website. • Members of the public are invited to listen to the teleconference and view the webinar. • Meeting materials can be found on the PCORI website. The recording of the webinar will also be made available to the public after this event. • Anyone may submit a comment through the webinar chat function. • No public comment period is scheduled Please visit www.pcori.org/events for more information. 3 COI Statement Welcome to the Rare Disease Advisory Panel Winter 2020 virtual meeting. I want to remind everyone that disclosures of conflicts of interest of members of the Advisory Panel are publicly available on PCORI’s website. Members of the Rare Disease Advisory Panel are reminded to update your conflict-of-interest disclosures if the information has changed, in addition to completing your annual disclosure. You can do this by contacting your staff representative, Rohini Mohanraj.​ Finally, if the Rare Disease Advisory Panel will deliberate or act on a matter that presents a conflict of interest for you, please inform one of the co-chairs so we can discuss how to best address the issue. 4 Meeting Agenda Presenters & Start Time Agenda Items Discussion Facilitator Scott Berns, 2:00 PM Welcome, Introductions, and Setting the Stage Doug Lindsay Carly Khan, 2:30 PM Introduction of RDAP PCORI Members, RDAP Program Staff Update, and Upcoming Activities Nora McGhee Karen Martin, 2:40 PM Engagement Awards and Rare Disease Organizations: Supporting Engagement in PCOR/CER Scott Berns 3:25 PM BREAK (10 minutes) Els Houtsmuller, Maternal Mortality and Intellectual Disabilities: Overview and Discussion of Issues related to Rare 3:35 PM Kelly Dunham, Scott Diseases Berns 4:15 PM BREAK (5 minutes) Laura Lyman 4:20 PM Identifying our National Priorities: Relevance for Rare Disease Populations Rodriguez, Jean Slutsky, Doug Lindsay Scott Berns, 4:50 PM Acknowledgments and Recap Doug Lindsay 5:00 PM Adjourn 5 RDAP Panelist Introductions 6 RDAP Members CLINICIANS PATIENTS, CAREGIVERS, AND PATIENT Scott Berns (Chair) ADVOCATES • CEO, National Institute for Children’s Health Quality Doug Lindsay (Co-Chair) Nancy Rose (American College of Medical Genetics and • Personal Medical Consultant Genomics) Sarah Bacon (Patient, advocate, and writer) Sherene Shalhub (University of Washington) Vanessa Boulanger (NORD) Laura Tosi (Children’s National Hospital) Danielle Boyce (Johns Hopkins University) RESEARCHERS Julie Gortze (Rare New England) Roxanna Bendixen (University of Pittsburgh) Mathew J. Edick (Michigan Public Health Institute) POLICY MAKERS Tilicia Mayo-Gamble (Georgia Southern University) Saira Sultan (Connect4Strategies) EX-OFFICIO MEMBER INDUSTRY Naomi Aronson (BCBSA) Salman Hussain (Charles River Associates) 7 RDAP Staff Introductions 8 Rare Disease Advisory Panel – PCORI Staff Carly Khan, PhD, MPH, RN Nora McGhee, PhD Rohini Mohanraj, MHA Program Officer Senior Program Officer Program Associate Healthcare Delivery and Clinical Effectiveness and Research Infrastructure Disparities Research Decision Science 9 PCORI Rare Disease-related Updates • Conducting Rare Disease Research Using PCORnet® — PCORI Board of Governors will vote in March 2021 • Must answer an important question about care of patients with rare disease AND • Build infrastructure of PCORnet to enhance capabilities for multi-site rare disease research • Studies can be either CER OR descriptive in nature that lead to future CER • The 2020 PCORI Annual Meeting featured a session focused on rare disease research: sessions are available for viewing on-demand via this link • PCORI Advisory Panel Applications are open through March 2021: please share this opportunity! • Resources: Research Fundamentals Building Effective Multi Stakeholder Research Teams (Coming Soon) 10 Engagement Awards and Rare Disease Organizations: Supporting Engagement in PCOR/CER Karen Martin, Program Director December 16, 2020 Meet Our Team Karen Martin, MIA Alicia Thomas, DrPH, MHS Ross Schwarzber, MA Director Associate Director Program Manager Ivey Wohlfeld Courtney Clyatt, MPH Kate Boyd, MPH, DrPHc Program Manager Senior Program Officer Program Officer Rachel Mosbacher, MPA Sangeeta Suku, MPH, MBA Fatou Ceesay, MPH Program Officer Program Associate Program Officer Objectives • Provide an overview of the Engagement Award Program • Discuss how the Engagement Awards can support rare disease organizations in building capacity for stakeholder engagement in PCOR/CER • Identify specific needs, activities, tools and assistance rare disease organizations need to successfully engage in PCOR/CER 13 Eugene Washington PCORI Engagement Award Program • Support projects to build a community of patients and other stakeholders equipped to participate as partners in PCOR/CER, as well as serve as channels to disseminate PCORI-funded study results • Funding to support engagement in, and with, research, not to conduct research Engage Develop Involve Community in Community Community in Research Skilled in PCOR Dissemination Processes 14 Engagement Award Funding Opportunities Engagement Award: Capacity Building $250,000 Up to 2 years Objective: Prepare patients and stakeholders to participate as partners in PCOR/CER and/or develop partnerships and infrastructure to disseminate and implement PCORI-funded research findings $250,000 Engagement Award: Dissemination Initiative Up to 2 years Objective: Support communities and organizations to actively disseminate PCORI-funded research findings Engagement Award: Stakeholder Convening Support $100,000 Up to 1 year Objective: Convene stakeholders to explore critical issues related to PCOR/CER and/or communicate PCORI-funded research findings to targeted end-users 15 What Engagement Awards Don’t Fund • Out of Scope for an Engagement Award Project: • Projects solely intended to increase patient engagement in health care or healthcare systems rather than healthcare research • Projects to design or test healthcare interventions • Activities that involve the use of a drug or medical device • Development of clinical practice guidelines, care protocols, or decision support tools • Development of coverage, payment, or policy recommendations or guidelines • Projects related to quality measures, or engagement around quality measures • Projects to recruit and enroll patients for clinical trials • Projects that only involve patients as subjects (individuals enrolled into a study as participants) • Research studies including randomized controlled trials, observational studies, and pragmatic clinical studies 16 What Engagement Awards Don’t Fund (continued) • Development or maintenance of a registry, or recruitment to participate in a registry • Projects designed solely to validate tools or instruments not created through a PCORI-funded project • Writing research proposals or completing grant applications, grantmaking • Projects focused on social determinants of health, with no focus on patient- centered outcomes research or comparative clinical effectiveness research • Planning for dissemination or dissemination initiatives without including PCORI-funded research or related products • Implementation of PCORI findings in a clinical practice setting (PCORI will fund dedicated implementation efforts through the Limited PCORI Funding Announcement: Implementation of PCORI-Funded Patient-Centered Outcomes Research Results) • Projects or meetings without a clear focus on patient-centered outcomes research or comparative clinical effectiveness research 17 Evolution of Funding Priorities 2014-2016 May 2020 •Knowledge Awards •Capacity Building •Training and June 2018- •Dissemination Development Awards June 2019 Initiative •Dissemination & •Stakeholder Implementation •Capacity Building Convening Awards •Dissemination •COVID-19 •Meetings and Initiative Enhancements and Conferences Support •Conference Support Special Cycle October 2017- November 2019 October 2020 February 2018 Special Project Funding •Capacity Building •Engagement Award Announcements: •Dissemination (general) •Community Initiative •Meetings and Convening •Stakeholder Conference Support •Accelerating the Convening Adoption of Tools and •Next Steps: Resources Opportunities for growth under PCORI 2.0 18 Feedback from RDAP Meeting – Spring 2020 • Identify ways to best support rare disease groups • Consider targeted funding announcements – rare and ultra-rare diseases • Bundling rare diseases that have common symptoms • Review language and readability of funding announcements • Increase accessibility to rare disease community through patient outreach • Identify essential activities, tools and skills rare disease groups need to successfully engage in PCOR/CER 19 Discussion Questions • What are the needs of smaller organizations (e.g., community-based organizations, patient/caregiver/advocacy organizations, associations, etc.) with regards
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