08:00 am Coffee & Networking

Optimizing Cost-Efficiencies in Patient Recruitment for Rare Disease Clinical Trials

9:00 am Optimizing Rare Disease Trials: Balancing Cost Efficiency With the Patient Voice

  • Monique Mulkern Head, Global Patient Insights & Solutions, Alexion Pharmaceuticals

Synopsis

  • Discussing how early incorporation of patient insights helps streamline trial design, reducing the need for costly amendments
  • Sharing specific examples of how patient input led to protocol changes that reduced trial costs and increased participation rates
  • Highlighting the methodology adapted from Tufts University for systematically incorporating patient feedback into trial processes

9:30 am Strategies for Cost-Effective Patient Recruitment in Rare Disease Trials

Synopsis

  • Analyzing success rates and cost savings achieved through a range of patient recruitment strategies
  • Implementing disease state awareness campaigns that efficiently educate both patients and healthcare professionals to reduce diagnosis time and streamline recruitment
  • Demonstrating how targeted awareness efforts lead to more efficient patient recruitment

10:00 am Roundtable: Harnessing AI for Efficient & Inclusive Patient Recruitment in Rare Disease Trials

Synopsis

  • Discovering AI platforms that facilitate matching patients with suitable trials for expedited enrolment
  • Discussing strategies for successfully integrating AI solutions into existing clinical trial recruitment processes
  • Examining case studies and lessons-learnt from AI-driven recruitment

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!

11:00 am Morning Break

11:30 am Roundtable: Strategies for Cost-Effective Patient Recruitment in Rare Disease Trials: Maximizing ROI

Synopsis

  • Analyzing data on the cost savings achieved through a range of patient recruitment strategies
  • Comparing cost-savings of traditional recruitment methods vs digital and more AI-enhanced methods
  • Discussing how early and ongoing engagement through these strategies improves retention, reducing costs associated with dropouts and re-recruitment

Engaging Patients Early & Leveraging Patient-Centric Trial Design to Expedite Recruitment

12:00 pm 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

12:30 pm Lunch Break

1:30 pm Successfully Integrating Patient Input into Clinical Trial Design

  • Kelli Wright Director, Patient Advocacy, Day One Biopharmaceuticals

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

2:00 pm Leveraging Adaptive Trial Designs for Greater Patient Inclusivity

  • Jennifer Gaskin Senior Director, Clinical Operations, Celldex Therapeutics

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

2:30 pm Panel Discussion: Engaging Patients Early for Inclusive Trial Design That Reflects the Population

  • Amanda Rohrig Director, Patient Advocacy, BridgeBio
  • Ella Balasa Patient Advocacy & Engagement Consultant, Independant Consultant
  • Heidi Floyd Patient Advocate, National Coalition for Cancer Survivorship

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

3:15 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

Transparency & Trust: Enhancing Patient Education in Rare Disease Trials

4:00 pm Building Trust & Overcoming Trial Recruitment & Retention Barriers in Diverse Communities: Case Study in Sickle Cell Disease

  • Ify Osunkwo Chief Patient Officer, Rare Disease, Novo Nordisk

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

4:30 pm Developing & Executing Education & Resource Strategies for Rare Disease Communities

  • Lori Correia Patient Advocacy Consultant, Tenaya Therapeutics

Synopsis

  • Presenting innovative educational strategies aimed at small, rare disease populations
  • Utilizing patient feedback to improve and adapt educational programs and resources
  • Navigating the challenges patients face in accessing relevant clinical trial information in rare disease communities

5:00 pm Closing Remarks

5:10 pm End of Day One