08:00 am Registration & Networking
8:55 am Chair’s Opening Remarks
Patient-Centric Trial Design & Recruitment
9:00 am Panel Discussion: Engaging Patients Early for Inclusive Trial Design That Reflects the Population
Synopsis
- Ensuring trial design reflects the true nature of the patient population including various demographics and disease subtypes
- Highlighting the significance of involving patients early in the trial design to ensure all protocols are realistic and acceptable to the patient population
- Strategies for crafting inclusive profiles that account for patients who may not fit into narrow inclusion/exclusion criteria
9:45 am Integrating Patient Input Into Clinical Trials for Enhanced Recruitment & Retention
Synopsis
- Engaging with patient communities to understand their needs and preferences
- Incorporating patient feedback to influence study protocols and outcome measures
- Highlighting operational considerations when adjusting trial protocols based on patient input
10:15 am Successfully Integrating Patient Input into Clinical Trial Design
Synopsis
- Exploring processes for effectively gathering and incorporating patient needs and feedback into trial designs
- Discussing approaches for finding the right balance between data collection and patient comfort
- Reviewing case studies of integration of patient feedback into trial protocols
10:30 am Speed Networking
Synopsis
As the rare disease research community comes together, this valuable session will ensure you reconnect with existing colleagues and forge new relationships. This structured networking opportunity will pair you with fellow attendees for several 3-minute introductions, allowing you to connect with industry professionals, patient advocates, and clinical operations experts in a dynamic and focused setting!
11:15 am Morning Break
11:45 am Leveraging Adaptive Trial Designs for Greater Patient Inclusivity
Synopsis
- Exploring the benefits of adaptive trial designs
- Enhancing patient inclusivity through adaptive designs
- Case study: Adaptive trial design in rare disease research for greater inclusivity of underrepresented populations
Elevating the Patient Voice & Community Trust
12:15 pm Session Reserved for My Tomorrows
Synopsis
12:45 pm Incorporating the Patient Voice in Rare Disease Clinical Trials: A Win/Win
Synopsis
- Discussing how early incorporation of patient insights helps streamline trial design, reducing the delays and cost associated with amendments
- Sharing specific examples of how patient input led to impactful protocol changes
- Highlighting the methodology adapted from Tufts Center for the Study of Drug Development (Tufts CSDD) to incorporate patient and caregiver feedback into trial processes
1:15 pm Lunch
2:45 pm Roundtable: Community-Centered Approaches to Building Trust in Clinical Trials
Synopsis
- Fostering relationships with trusted healthcare professionals to improve recruitment and retention in underrepresented communities
- Developing messaging and materials that address the cultural sensitivities and unique concerns of diverse patient populations
- Involving local advocates and peer leaders to build trust and encourage sustained participation in clinical trials
3:15 pm Building Trust & Overcoming Trial Recruitment & Retention Barriers in Diverse Communities: Case Study in Sickle Cell Disease
Synopsis
- Approaches for developing trust between industry and healthcare providers and communities
- Co-developing tailored educational materials and resources that resonate with diverse patient populations
- Understanding the “long game” in maintaining ongoing engagement, fostering a supportive community where patients feel valued, informed, and empowered in their healthcare decision
3:45 pm Afternoon Break & Poster Session
Synopsis
This Poster Session is your go-to session to obtain competitive insights, deeply connect with your peers and present your most innovative work. For more information or to submit your abstract, please email info@hansonwade.com
Navigating Compliance: Ethical & Legal Strategies in Patient Engagement
4:30 pm Tackling Patient Expectations & Addressing Misinformation
Synopsis
- Exploring challenges associated with sharing non-clinical data with rare disease communities
- Unravelling methods to aid patients in choosing clinical trials aligned with their specific quality of life goals and disease management need
- Realistic expectation setting in clinical trial participation, addressing the potential outcomes and limitations of experimental therapies
5:00 pm Building Transparent Relationships: Strategies & Best Practices on Communicating Clinical Trial Data to Patient Organizations
Synopsis
- Relationship building with patient organizations
- Sharing clinical trial data in a legal and compliant manner
- Best practices in sharing data with patient organizations