Will provide insights into the value of accessibility in rare disease clinical research and how sponsors, patient advocates, researchers and regulators might move from discussion to action.
TORONTO (PRWEB)
March 07, 2023
Each panel in this 4-day webinar series, whether watched individually or in totality with the other panels, will provide insights into the value of accessibility in rare disease clinical research and how sponsors, patient advocates, researchers and regulators might move from discussion to action.
Panel 1: Is Disability Part of Your DEI Planning and Engagement in Rare Disease?
Time: Monday, March 27, 2023, from 10am – 11am EDT
Moderator: Kendall Davis, Director, Advocacy Strategy, Centre for Rare Diseases, ICON plc
Panelists: Erika Heiges, MPH, CHES, Senior Engagement Strategy Lead, Clinical Trial Engagement & Enrollment & DAWN DDiCT Team Lead, Bristol Myers Squibb; James Huang, MD, Director of Student Health Services, Gallaudet University; Amir Rahimi, Senior Manager, Product Communications and Public Affairs, Janssen Pharmaceuticals; Angela Rochelle, Head of Healthcare Diversity Initiatives, Langland; and Grayson Schultz, Writer, Activist and Educator.
Panel 2: Unique Considerations Around Accessibility for Global Clinical Trials Time: Monday, March 27, 2023, from 11am – 12pm EDT
Moderator: Bojana Mirosavljevic, MSc, Director, Patient Advocacy Strategy, ICON plc
Panelists: Nikhil Jayswal, Director, IBD Patient Support Foundation (India); Svenja Kaden, PhD, Vice President, SCN2A Germany e.V.; and Andres Trevino, Patient Advocacy, Chiesi Global Rare Diseases.
Panel 3: Not All Measures Matter: How to Identify Outcomes Measures Appropriate for Your Rare Disease Patient Populations
Time: Tuesday, March 28, 2023, from 10am – 11am EDT
Moderator: Devra Densmore, MPA, Principal Consultant, Elevate Advocacy
Panelists: Gabrielle Conecker, MPH, Executive Director and Co-Founder, Decoding Developmental Epilepsies; Nasha Fitter, MBA, Cofounder and CEO, FOXG1 Research Foundation and VP, Patient Network & Data, Invitae; Tjitske Kleefstra, PhD, Professor, Radboudumc Nijmegen and ErasmusMC, Rotterdam, The Netherlands; Pat Koochaki, PhD, Principal, Patient Centered Outcomes, ICON plc; and Tanja Zdolšek Draksler, PhD, Researcher and Project Manager, Jožef Stefan Institute & Founder and leader, IDefine Europe.
Panel 4: Best Practices in Accessible Clinical Trial Design
Time: Wednesday, March 29, 2023, from 10am – 11am EDT
Moderator: Patti Murphy, Sr. Director of Therapeutic Expertise, ICON plc
Panelists: Rigoberto “Rigo” Garcia, Executive Director, Hemophilia Foundation of Southern California; Veronica Moore, Senior Manager, Patient Advocacy, Horizon Therapeutics; Zo Ratnasi, President & Master Strategist, sixsense strategy group; and Tricha Shivas, Chief Strategy Officer, Foundation for Sarcoidosis Research (FSR).
Panel 5: Accessibility in Rare Disease Paediatric Clinical Trials
Time: Wednesday, March 29, 2023, from 11am – 12pm EDT
Moderator: Firas Taha, MD, Medical Director, Neurology, Medical Affairs, ICON plc
Panelists: Jana Banesh, Director of Therapeutic Expertise, ICON plc; Sarita Edwards, CEO & President, The E.WE Foundation; and Ryan Sheedy, Dad, Rare Disease Caregiver & Founder, mejo.
Panel 6: Where do Expanded Access Programs fit into Trial Accessibility?
Time: Thursday, March 30, 2023, from 10am – 11am EDT
Moderator: Will Maier, Vice President, Center for Rare Diseases, ICON plc
Panelists: Deborah Gelinas, MD, Executive Director, Neuromuscular, argenx; Jack Johnson, Executive Director & Cofounder, Fabry Support & Information Group; and Ray Kaczmarek, Senior Director, Project Operations, Commercialisation & Outcomes, ICON plc.
Panel 7: Meeting Trial Participants Where They’re at: Where DCTs can help Achieve Greater Accessibility
Time: Thursday, March 30, 2023, from 11am – 12pm EDT
Moderator: Afshawn Chakamian, Director of Therapeutic Expertise, ICON plc
Panelists: Ashmee Bharadia, BSc (Hons), Vice President, In Home Services, Accellacare; Sneha Dave, Executive Director, Generation Patient; Craig Lipset, Co-Chair, Decentralized Trials & Research Alliance, Adjunct Assistant Professor, Rutgers University, Vice President, Foundation for Sarcoidosis Research, Managing Partner, Clinical Innovation Partners; and Katie Wright, Person living with VEDS; Host of Staying Connected podcast.
For more information, or to register for this 4-day series starting on Monday, March 27, 2023, visit Rare Disease Week 2023: Exploring Accessibility in Rare Disease Clinical Research.
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