Putting Patients First: How to bring a different approach to rare disease studies

13

May

  • 3pm London / 10am New York
  • Free
  • Why attend?
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Why attend?

Understanding the patient pathway – what it means for a person to have that actual disease – before study initiation is critical to running effective rare disease studies.

Many trials continue to overlook key barriers to participation, from accessibility and trust to communication and support. This webinar will explore how applying insights from an understanding of the patient pathway in both study design and execution can improve trial enrollment, retention, and outcomes in rare disease studies.

Key Discussion Points:

  • How to gather insights into the patient pathway
  • Understanding the root causes of low patient participation and why traditional trial models may be falling short in rare disease studies
  • Practical strategies to build patient-centric trials – applying patient pathway insights to protocol and study design
  • Practical strategies for executing patient-centric trials – applying patient pathway insights to study execution and operations
  • The role of patient advocacy groups, digital engagement, and transparency in building trust and long-term participation.

Speakers

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Jonathan Kornstein
Vice President, Rare Disease and Pediatrics

Jonathan Kornstein is Vice President, Rare Disease and Pediatrics at Caidya and has over 29 years of experience in the Pharmaceutical and CRO industry. He has demonstrated a depth of project management and clinical operations experience in a multitude of therapeutic areas. Jonathan provides strategic consultation and direction to clinical management, commercial development, and business development teams facilitating overall success in clinical trials.  Jonathan takes a patient centered approach in implementing clinical trials and has a significant amount of experience overseeing rare indications in clinical trials.

Jonathan holds a bachelor’s degree in biology from Hamilton College in Clinton, New York and is homebased in Chapel Hill, North Carolina.

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Gemma O’Connor
Director, Project Management

Gemma is a Project Director with over 20 years of clinical research experience, including 14 years in project management roles with a specialist focus on patient education, recruitment and retention. She has a proven record of supporting Caidya’s biopharma clients with timely and high-quality delivery of their studies. She has experience across a number of therapy areas, including expertise in Rare Disease (Lipoprotein Lipase Deficiency, Glioblastoma, Lupus, Familial Hypercholesterolemia, TGCT) and Pediatrics (Vaccination, Pancreatitis, Bacterial Infection)

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