8:00 am Check in & Refreshments
8:40 am Chair’s Opening Remarks
NAVIGATING CHALLENGES, FOSTERING TRUST, AND EMPOWERING UNDERSTANDING WITH PATIENT-CENTRIC GENE THERAPY EDUCATION
8:50 am Strategies for Early-Stage Gene Therapy Education with Industry- Advocacy Partnerships
Synopsis
- Learn about the pivotal role of patient advocacy groups in shaping educational initiatives for rare diseases at early stages of gene therapy development
- Explore the strategies for co-creating educational content with advocacy organizations, fostering a shared understanding of gene therapy and clinical trials within patient communities
- Understand the importance of building trust within patient populations and how collaborative content development plays a crucial role in dispelling distrust
9:20 am Unleashing the Power of Diverse Communication Strategies in Patient Engagement
Synopsis
- Delving into the unique communication preferences within different communities and the importance of recognizing that a singular approach may not effectively resonate with all
- Emphasizing the need to tailor communication methods based on the dynamics of each community, whether it’s leveraging healthcare providers, community leaders, or online platforms to ensure relevance and trust
- Discussing real-world examples of how diverse communication strategies have positively impacted patient engagement, fostering a deeper connection between industry, advocacy groups, and the communities they serve
9:50 am The Importance of Early Patient Engagement in Cell And Gene Therapy Development
Synopsis
- A brief introduction to Seques: who we are and what we do
- Why early strategic planning is important, particularly for cell and gene therapies
- The role of patient insights in informing early strategic planning
- The impact of engaging patients across all stages of cell and gene therapy development
- How Seques can support with gathering and using patient insights with maximum impact
10:00 am Speed Networking
Synopsis
Our speed networking is the ideal opportunity to get face-to-face time with the brightest minds working in gene therapy patient engagement and introduce yourself to the attendees that you would like to have more in-depth conversations with. Benchmark against industry leaders and establish meaningful business relationships to pursue for the conference and beyond.
11:00 am Exploring how to Adapt the Engagement Strategies in Communities Potentially Resistance to Gene Therapies
Synopsis
- Explore the unique challenge of addressing potential resistance within the Deaf and Hard of Hearing (DHH) community towards gene therapy and the concept of a “cure.”
- Discuss the delicate balance of advancing gene therapy initiatives while respecting the wishes of those who do not believe in medical intervention for hearing loss
- Emphasize the importance of diversity in advisory boards, including everyday individuals, parents, Deaf and Hard of Hearing adults, and professionals with various experiences
- Discuss the ongoing efforts to bridge the gap between gene therapy initiatives and the preferences of the DHH community
INNOVATIVE STRATEGIES IN GENE THERAPY RECRUITMENT: DIVERSITY, VIRTUAL ENGAGEMENT, PATIENT-CENTRIC EVENTS, AND ADVOCACY EMPOWERMENT
11:30 am DEI in Clinical Trials: Current Initiatives and the Impact of the FDA Guidance on Cell and Gene Therapy Trials
Synopsis
- Assessment of current initiatives employed to improve clinical trial diversity
- Current challenges and barriers for patients, PIs, and life science executives
- Impact of FDA guidance on pharma and biotech organizations
- Guidance on what tactics are the most likely to be impactful to improve trial diversity
- Special considerations for ensuring cell and gene therapy trial diversity
12:00 pm Lunch & Networking
1:00 pm Breaking Barriers in Gene Therapy Recruitment and Engagement: Navigating Trust and Co-Creation Beyond Traditional Strategies for Patients Living with Sickle Cell Disease
Synopsis
- Explore the innovative approach of co-creating recruitment campaigns with underrepresented communities, involving them in every step of the process to build trust and ensure cultural relevance
- Delve into the role of patient advocacy in establishing trust, with insights into collaboration with patient advocates to educate communities, influence protocol changes, and contribute to the success of gene therapy trials
2:00 pm Afternoon Break
2:45 pm Beyond the Endpoint: Preparing to Support Patients after Gene Therapy
Synopsis
- Examining challenges when gene therapy experiences differ from patient expectations or initial informed consent
- Highlighting the importance of learning from patient experiences
- Discussing challenges faced by patients in understanding and coping with gene therapy complexities
- Emphasizing continuous improvement in education, informed consent and long-term follow-up strategies
- Sharing potential strategies and tactics to maintain engagement and retention in long-term gene therapy follow-up studies
STRATEGIES FOR INCLUSIVE PATIENT ENGAGEMENT: A COMPLIANCE PERSPECTIVE
3:30 pm Building Patient-Centric Spaces: Engaging Initiatives, Collaborative Events, and Outreach Success
Synopsis
- Showcasing successful patient outreach initiatives, activities and their outcomes
- Fostering a collaborative environment by actively involving patients in the planning and execution of events for a truly patient-centric approach
- Using innovative strategies to engage and educate patients in various locations
3:30 pm Mastermind: Approaches for Navigating Compliance in Patient Involvement
Synopsis
- Understanding the significance of involving a range of professionals in patient engagement efforts, highlighting their unique perspectives and addressing challenges faced
- Exploring compliance challenges as a critical aspect of patient engagement, emphasizing their influence on the overall success and ethical conduct of initiatives
- Delving into risk-management regarding patient involvement in early engagement efforts
4:00 pm Roundtable: Exploring Strategies to Reduce Patient Burden When Involved in a Gene Therapy Trial
Synopsis
- Understanding he importance of clear, accessible, and ongoing communication between healthcare providers and patients throughout the trial
- Implementing feedback mechanisms to continuously gather and address patient concerns throughout the trial
- Developing robust protocols for managing side effects and providing patients with easy access to support and medical advice