Patients as Partners in Clinical Research

Justin Hopkin, MD, Patient Advocate / Division Chief, Hospital Medicine / Chairman Emeritus, University of Rochester / National Niemann-Pick Disease Foundation

9:15AM - 9:40AM

Keynote Fireside Chat: Embedding Patient Advocacy into Corporate DNA - Pathways to Lasting Impact

Fireside Guest:

Jayne Gershkowitz, Chief Patient Advocate, Amicus Therapeutics

Moderated By:

Sabina Kineen, Patient, Advocate

Showing Events in 1 Track from 09:40am to 10:20am

ASK THE PATIENTS

9:40AM - 10:20AM

Clinical Trial Feedback from the Experiences of Patients and Caregivers for Better Planning and Execution

Christine McLennan, Associate Director, Clinical Trials, BioNTech US

Jon Nelson, Lived-Experience Expert in Mental Health & Chief Pulverize Officer, Pulverize The Stigma

Showing Events in 1 Track from 10:20am to 11:00am

Grand Opening Break and Networking

10:20AM - 11:00AM

Grand Opening of the Patients as Partners Exhibits, Networking and Breakfast

Showing Events in 1 Track from 11:00am to 12:45pm

Morning Sessions

11:00AM - 11:25AM

Keynote: Clinical Trials FOR the Community, WITH the Community

Ifeyinwa (Ify) Osunkwo, MD, Chief Patient Officer, Novo Nordisk Rare Disease

11:25AM - 12:10PM

Interactive Session: Solutions for Patient Access and Engagement in Clinical Trials

Rohita Sharma, PhD, Global Senior Director, Patient Insights & Solutions, Rare Disease Medical Affairs, Alexion Pharmaceuticals

12:10PM - 12:15PM

5-Minute Health Break

12:15PM - 12:45PM

Reducing Patient Burden: An Interactive “Pop-Up” Session

Luncheon, Networking and Optional Roundtable Discussions

Showing Events in 1 Track from 12:45pm to 01:45pm

Lunch and Optional Roundtable Discussions

12:45PM - 1:45PM

Showing Events in 1 Track from 01:05pm to 01:50pm

Roundtable Discussions

Optional Roundtable Discussions Begin

Showing Events in 6 Tracks from 01:05pm to 01:50pm

Roundtable 1

Early-Phase Patient Engagement Strategies for Biotech and Medical Device Development

Kert Gunasekaran, Program Director, Science of Patient Input, Medical Device Innovation Consortium (MDIC)

Roundtable 2

Strategies for Overcoming Systemic Barriers to Equitable Clinical Trial Participation for BIPOC Women

Roundtable 3

Redefining Advocacy Group Collaborations: Meeting Today’s Clinical Trial Demands

Roundtable 4

Innovative Patient Engagement and Advocacy Strategies for Rare Disease

Roundtable 5

Optimizing Patient Data Management: Strategies for Building Trust and Ensuring Transparency

Roundtable 6

Practical Success Stories in Long-Term Patient Engagement

Showing Events in 1 Track from 01:50pm to 03:10pm

Afternoon Track Choices

1:50PM - 3:10PM

Pharma, Biotech and Advocacy Case Studies on Patient Engagement Initiatives and Demonstrating Impact

Showing Events in 3 Tracks from 01:50pm to 03:10pm

Track 1: Operationalizing / Scaling Patient Engagement

Lundbeck on How They Embed Patient Perspectives into Clinical Trial Infrastructure

Melissa Herman, Senior Specialist, Patient Insights, Global Value Evidence & Patient Insights, Lundbeck

J&J: Creating a Patient-Centric Operating Model to Drive Accountability and Transform Clinical Development

April Lewis, Head, Innovation Health, J&J Innovative Medicine

Pfizer: Ensuring Continuity in Patient Insights to Strengthen Product Development

Stephanie Christopher, Patient Engagement Lead, R&D, Pfizer

Medtronic: Developing Sustainable Patient Engagement through Internal Playbooks for Product Innovation

Korinne Jew, Sr. Director, Enterprise Clinical Research & Medical Science, Medtronic

Track 2: DE&I / Community Engagement

Biogen: Achieving Health Equity through Authentic Patient Engagement from First Interaction

Katie King, MSHS, Associate Director, PCE DU Lead, Patient Centricity & Engagement, Global Clinical Operations, Biogen

MEDTECH/MED DEVICE

Endo Pharma: Strengthening Site Partnerships to Improve Operational Efficiency and Enhance Patient Care

Rosalie Filling, VP, Senior Global Head, R&D Operations, Endo Pharmaceuticals

Biogen & NMQF: Implementing Community-Centric Models to Enhance Diversity and Improve Outcomes in Clinical Trials

Savine DaCosta, Health Equity Lead, Biogen

Michael DeSalvo Solarte, MSW, Program Manager, Center for Professional & Strategic Alliances, National Minority Quality Forum (NMQF)

Track 3: Pharma & Advocacy Collaborations / Early Patient Engagement

Agios: Integrating Patient Perspectives in the RISE UP Trial: A Model for Collaborative Trial Design

Holly John, Senior Director, Global Patient Advocacy, Medical Affairs, Agios Pharmaceuticals

Day One Bio: Accelerating Pediatric Cancer Research with a Multistakeholder Collaboration Framework

Christa Kerkorian, VP, Patient Advocacy, Day One Biopharmaceuticals

2:20PM - 2:40PM

Edwards Lifesciences: Prioritizing Patient Preferences to Influence Product Design and Regulatory Outcomes

Alissa Hanna, Director, Patient Engagement, Edwards Lifesciences

Rhoyge Traylor, Global Sr Director, Patient Engagement, Edwards Lifesciences

2:40PM - 3:00PM

J&J: Patient Partnerships that Enhance Recruitment, Retention, and Speed in Rare Disease Trials

Lisa Shea, MPH, RD, Director, Scientific Patient Engagement Research Leader, J&J Innovative Medicine

Showing Events in 1 Track from 03:10pm to 03:50pm

Afternoon Break and Networking

3:10PM - 3:50PM

Afternoon Break and Networking

Showing Events in 1 Track from 03:50pm to 04:50pm

Innovative Solutions and Technologies that Enhance Patient-Enabled Trials and Services

3:50PM - 4:50PM

Innovative Solutions and Technologies that Enhance Patient-Enabled Trials and Services

Media:

Showing Events in 1 Track from 04:50pm to 05:00pm

10-Min Health Break

4:50PM - 5:00PM

10-Min Health Break

Showing Events in 1 Track from 05:00pm to 05:40pm

Afternoon General Session

5:00PM - 5:40PM

Strategic Panel: Laying the Foundation for Effective Diversity Action Plans in Clinical Trials

Amanda Beasley, PhD, Director, Representation in Clinical Research (RISE), Amgen

Willyanne DeCormier Plosky, DrPh, Program Director, Multi-Regional Clinical Trials Center of Brigham and Women's Hospital and Harvard (MRCT)

Katie King, MSHS, Associate Director, PCE DU Lead, Patient Centricity & Engagement, Global Clinical Operations, Biogen

Maria Restrepo, PhD, Program Director, Diversity in Clinical Trials, Medtronic

AnneMarie Winkler, Associate Director, Clinical Trial Optimization and Innovation, GenMab

Showing Events in 1 Track from 05:45pm to 06:45pm

Networking Reception

5:45PM - 6:45PM

Annual Networking Reception and Optional Fundraising Activity

Showing Events in 1 Track from 07:45am to 08:50pm

Morning Remarks

7:45AM - 8:40AM

Registration, Tea / Coffee

8:40AM - 8:50PM

Co-Chairs’ Welcome & Opening Remarks

Co-Chairs:

Angela Bilkhu, Sr Global Patient Partnership Director, Hematology Product Development: Medical Affairs, Roche

Rucha Shah, Patient Advocate, and Assistant Clinical Research Project Manager, ECOG-ACRIN Cancer Research Group

Showing Events in 1 Track from 08:50am to 09:40am

Opening Keynotes

8:50AM - 9:15AM

Caregiver Keynote: Resilience and Hope - How a Clinical Trial Changed Garrett’s Life with ASMD

Justin Hopkin, MD, Patient Advocate / Division Chief, Hospital Medicine / Chairman Emeritus, University of Rochester / National Niemann-Pick Disease Foundation

9:15AM - 9:40AM

Keynote Fireside Chat: Embedding Patient Advocacy into Corporate DNA - Pathways to Lasting Impact

Fireside Guest:

Jayne Gershkowitz, Chief Patient Advocate, Amicus Therapeutics

Moderated By:

Sabina Kineen, Patient, Advocate

Showing Events in 1 Track from 09:40am to 10:20am

ASK THE PATIENTS

9:40AM - 10:20AM

Clinical Trial Feedback from the Experiences of Patients and Caregivers for Better Planning and Execution

Christine McLennan, Associate Director, Clinical Trials, BioNTech US

Jon Nelson, Lived-Experience Expert in Mental Health & Chief Pulverize Officer, Pulverize The Stigma

Showing Events in 1 Track from 10:20am to 11:00am

Grand Opening Break and Networking

10:20AM - 11:00AM

Grand Opening of the Patients as Partners Exhibits, Networking and Breakfast

Showing Events in 1 Track from 11:00am to 12:45pm

Morning Sessions

11:00AM - 11:25AM

Keynote: Clinical Trials FOR the Community, WITH the Community

Ifeyinwa (Ify) Osunkwo, MD, Chief Patient Officer, Novo Nordisk Rare Disease

11:25AM - 12:10PM

Interactive Session: Solutions for Patient Access and Engagement in Clinical Trials

Rohita Sharma, PhD, Global Senior Director, Patient Insights & Solutions, Rare Disease Medical Affairs, Alexion Pharmaceuticals

12:10PM - 12:15PM

5-Minute Health Break

12:15PM - 12:45PM

Reducing Patient Burden: An Interactive “Pop-Up” Session

Luncheon, Networking and Optional Roundtable Discussions

Showing Events in 1 Track from 12:45pm to 01:45pm

Lunch and Optional Roundtable Discussions

12:45PM - 1:45PM

Showing Events in 1 Track from 01:05pm to 01:50pm

Roundtable Discussions

Optional Roundtable Discussions Begin

Showing Events in 6 Tracks from 01:05pm to 01:50pm

Roundtable 1

Early-Phase Patient Engagement Strategies for Biotech and Medical Device Development

Kert Gunasekaran, Program Director, Science of Patient Input, Medical Device Innovation Consortium (MDIC)

Roundtable 2

Strategies for Overcoming Systemic Barriers to Equitable Clinical Trial Participation for BIPOC Women

Roundtable 3

Redefining Advocacy Group Collaborations: Meeting Today’s Clinical Trial Demands

Roundtable 4

Innovative Patient Engagement and Advocacy Strategies for Rare Disease

Roundtable 5

Optimizing Patient Data Management: Strategies for Building Trust and Ensuring Transparency

Roundtable 6

Practical Success Stories in Long-Term Patient Engagement

Showing Events in 1 Track from 01:50pm to 03:10pm

Afternoon Track Choices

1:50PM - 3:10PM

Pharma, Biotech and Advocacy Case Studies on Patient Engagement Initiatives and Demonstrating Impact

Showing Events in 3 Tracks from 01:50pm to 03:10pm

Track 1: Operationalizing / Scaling Patient Engagement

Lundbeck on How They Embed Patient Perspectives into Clinical Trial Infrastructure

Melissa Herman, Senior Specialist, Patient Insights, Global Value Evidence & Patient Insights, Lundbeck

J&J: Creating a Patient-Centric Operating Model to Drive Accountability and Transform Clinical Development

April Lewis, Head, Innovation Health, J&J Innovative Medicine

Pfizer: Ensuring Continuity in Patient Insights to Strengthen Product Development

Stephanie Christopher, Patient Engagement Lead, R&D, Pfizer

Medtronic: Developing Sustainable Patient Engagement through Internal Playbooks for Product Innovation

Korinne Jew, Sr. Director, Enterprise Clinical Research & Medical Science, Medtronic

Track 2: DE&I / Community Engagement

Biogen: Achieving Health Equity through Authentic Patient Engagement from First Interaction

Katie King, MSHS, Associate Director, PCE DU Lead, Patient Centricity & Engagement, Global Clinical Operations, Biogen

MEDTECH/MED DEVICE

Endo Pharma: Strengthening Site Partnerships to Improve Operational Efficiency and Enhance Patient Care

Rosalie Filling, VP, Senior Global Head, R&D Operations, Endo Pharmaceuticals

Biogen & NMQF: Implementing Community-Centric Models to Enhance Diversity and Improve Outcomes in Clinical Trials

Savine DaCosta, Health Equity Lead, Biogen

Michael DeSalvo Solarte, MSW, Program Manager, Center for Professional & Strategic Alliances, National Minority Quality Forum (NMQF)

Track 3: Pharma & Advocacy Collaborations / Early Patient Engagement

Agios: Integrating Patient Perspectives in the RISE UP Trial: A Model for Collaborative Trial Design

Holly John, Senior Director, Global Patient Advocacy, Medical Affairs, Agios Pharmaceuticals

Day One Bio: Accelerating Pediatric Cancer Research with a Multistakeholder Collaboration Framework

Christa Kerkorian, VP, Patient Advocacy, Day One Biopharmaceuticals

2:20PM - 2:40PM

Edwards Lifesciences: Prioritizing Patient Preferences to Influence Product Design and Regulatory Outcomes

Alissa Hanna, Director, Patient Engagement, Edwards Lifesciences

Rhoyge Traylor, Global Sr Director, Patient Engagement, Edwards Lifesciences

2:40PM - 3:00PM

J&J: Patient Partnerships that Enhance Recruitment, Retention, and Speed in Rare Disease Trials

Lisa Shea, MPH, RD, Director, Scientific Patient Engagement Research Leader, J&J Innovative Medicine

Showing Events in 1 Track from 03:10pm to 03:50pm

Afternoon Break and Networking

3:10PM - 3:50PM

Afternoon Break and Networking

Showing Events in 1 Track from 03:50pm to 04:50pm

Innovative Solutions and Technologies that Enhance Patient-Enabled Trials and Services

3:50PM - 4:50PM

Innovative Solutions and Technologies that Enhance Patient-Enabled Trials and Services

Media:

Showing Events in 1 Track from 04:50pm to 05:00pm

10-Min Health Break

4:50PM - 5:00PM

10-Min Health Break

Showing Events in 1 Track from 05:00pm to 05:40pm

Afternoon General Session

5:00PM - 5:40PM

Strategic Panel: Laying the Foundation for Effective Diversity Action Plans in Clinical Trials

Amanda Beasley, PhD, Director, Representation in Clinical Research (RISE), Amgen