9:00 am Coffee & Networking

Enhancing Clinical Trial Awareness Among Physicians to Overcome Challenges & Bridge Gaps for Better Patient Outcomes

10:00 am Roundtable: Empowering Clinicians: Enhancing Awareness of Clinical Trial Opportunities

Synopsis

  • Illustrating the challenges clinicians face in staying informed about clinical trials amidst their daily responsibilities and patient care
  • Addressing the gaps in knowledge among clinicians regarding available trials beyond those at their own institutions or sponsored by major foundations
  • Discussing strategies for fostering collaboration between pharmaceutical companies, patient advocacy groups, and healthcare institutions to disseminate trial information effectively
  • Presenting case studies where enhanced clinician awareness led to increased patient participation in clinical trials and improved outcomes

10:30 am Enhancing Awareness & Accessibility of Rare Disease Clinical Trials

  • Bethany Firem Associate Director, Global Patient Affairs, BioMarin Pharmaceutical

Synopsis

  • Navigating the challenges patients face in accessing relevant clinical trial information in rare disease communities
  • Highlight successful examples where centralized platforms have effectively improved patient access to clinical trials, leading to increased participation and engagement

11:00 am Morning Break

Navigating Compliance: Ethical & Legal Strategies in Patient Engagement

12:00 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

12:30 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

1:00 pm Lunch Break & Networking

2:00 pm Roundtable:Ensuring Ethical & Compliant Communication Throughout Rare Disease Trials

Synopsis

  • Introducing approaches for sharing less favourable data ethically and compliantly
  • Maintaining transparency with patient organizations during challenging updates
  • Managing global communication effectively, considering diverse regulatory environments

2:30 pm Exploring Creative Solutions for Minimizing Participation Challenges in Rare Disease Trials

  • Belle Estee Dante Patient Recruitment & Retention Global Lead, Rare Disease, Rare Blood Disorders, Neurology, Sanofi
  • Samantha Botts Global Recruitment & Retention Lead, Sanofi

Synopsis

  • Identifying and discussing common hurdles to patient retention 
  • Introducing innovative solutions to minimize these burdens
  • Highlighting the role of technology in facilitating easier participation

Boosting Patient Retention During Rare Disease Trials

3:00 pm Optimizing Patient Engagement Throughout the Trial Process

Synopsis

  • Understand the specific needs and lifestyles of different disease communities and how customized engagement plans can optimize clinical trial participation
  • Explore barriers to recruitment, engagement and retention in rare disease trials
  • Present examples of successful engagement strategies for different patient communities throughout the clinical trial development cycle
  • Introduce methods for regulatory gathering patient feedback to ensure retention

3:30 pm Optimizing Clinical Operations to Overcome Participation Barriers

Synopsis

  • Identifying key operational hurdles that affect patient retention
  • Implementing solutions to simplify patient visits, such as centralized scheduling systems, coordinated multi-site appointments, and improved site accessibility
  • Incorporating wearable technology for continuous data collection and monitoring, reducing the frequency of in-person visits

4:00 pm Closing Remarks

4:10 pm End of Summit