Site Selection Solutions Using Patient Insights for Rare Disease Trials

In rare disease clinical trials, a comprehensive landscape analysis is essential for identifying the right sites, investigators and patient populations to ensure successful enrollment and retention. Traditional approaches rely heavily on published literature and academic networks as well as historical data from past clinical trials, often overlooking critical insights from local treatment patterns and patient communities. This gap can lead to missed opportunities, inaccurate estimation of enrollment potential and prolonged study timelines. This webinar demonstrates how patient-informed landscape analysis can strengthen site-selection decisions, and registration is now open.

To optimize site selection and recruitment for rare disease studies, it is crucial to conduct a systematic assessment of the existing research, development and market environment within the specific indication of interest. Implementing a three-pillar assessment approach that integrates data intelligence, medic-to-medic outreach and patient advocacy engagement supports more informed site-selection decisions earlier in the planning process.

In this webinar, the featured speakers will share practical insights from a landscape analysis approach and demonstrate why early investment in patient-centric intelligence leads to more feasible, ethical and successful rare disease trials.

Topics will include:

• Leveraging comprehensive data sources to understand the competitive landscape, epidemiology, centers of excellence and historical recruitment performance
• Conducting structured peer-level conversations with key opinion leaders and investigators to assess scientific interest, patient availability, recruitment potential and protocol feasibility
• Building relationships with patient organizations to understand the patient journey and uncover site opportunities
• Sharing of real-world case studies to showcase the value of strategic landscape analysis

Register for this webinar to learn how site selection improves when landscape analysis incorporates patient communities, real-world treatment patterns and site readiness signals.

Speakers

Paula Orandash, Director, Patient Engagement, Ergomed Clinical Research

Paula Orandash is a dedicated and passionate Director of Patient Engagement at Ergomed. With over three decades of experience in the pharmaceutical and non-profit healthcare industry, Paula is a seasoned expert in patient-centric approaches to drug development and rare disease advocacy.

Paula’s commitment to improving the lives of patients with rare diseases is evident in her work, where she leads initiatives to ensure that the patient voice is integrated into every stage of the drug development process. Her strategic mindset and collaborative approach have been instrumental in driving patient engagement strategies that prioritize empathy, empowerment and inclusivity.

With a background in healthcare communications and patient advocacy, Paula brings a unique perspective to her role, bridging the gap between patients, researchers and industry stakeholders. She is known for her ability to build strong relationships within the rare disease community and her unwavering dedication to amplifying patient voices in research and development.

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Benjamen Varsano, Director, Operational Strategy/Office Director, Ergomed Clinical Research

Dr. Varsano has 20+ years of experience in clinical research and 15+ years in leadership and oversight. He managed clinical studies for numerous rare disease indications, providing support for five approved drugs/molecules. He recently provided Project Director portfolio leadership for six rare disease Phase I-IV trials, with three of them receiving marketing authorization, one of which was a first-in-class therapy for a rare hematology condition. Dr. Varsano’s background as a Medical Doctor with 9 years of experience in clinics provided him with a deep understanding of patient needs and knowledge about the mechanism of action and principles of various molecules. He is passionate about the advancements in precision medicine and gene and cell therapy that have transformed the treatment landscape in rare diseases. Yet, he recognizes that patients, particularly those suffering from rare diseases, still face significant unmet needs.

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