Clinical Trials in Rare Disease: Integrating Patient Voice | Alira Health

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Clinical Trials in Rare Disease: Best Practices for Integrating the Patient Voice

An often-overlooked component of the clinical trial design and execution process in rare diseases is the importance of the most crucial stakeholder: the patient. During this fireside chat, we discussed some practical suggestions on how to engage patients in the clinical trial process. Clinical trials in rare diseases are traditionally more challenging than trials in more common diseases. Sponsors and researchers are well aware that issues such as a small pool of potential participants and the complexities of trial participation often make the overall process less efficient and can slow down the delivery of life-changing medicines to the global market.

Here Is What You Will Learn:

How to improve the design of your clinical trials through the involvement of patient representatives
How to choose outcomes relevant to patients
How to increase patient retention and compliance through early engagement
How to engage successfully with patient-centric stakeholders, such as patient organizations, for the success of a clinical trial

Meet the Speakers

Chris Rao
Senior Vice President, Clinical Development, Alira Health

Chris Rao
Senior Vice President, Clinical Development, Alira Health

Christopher Rao has 15 years of experience in clinical research, with a focus on clinical trial design and operations. As a strategist, Christopher works identifies client’s key needs early and creates tailored, targeted plans for clinical development and market success. Throughout his career, Christopher has worked closely with small-to-medium biotech and pharmaceutical oncology companies, developing novel technologies.

Trishna Bharadia
Health Advocate and Patient Engagement Consultant, The Spark Global

Trishna Bharadia
Health Advocate and Patient Engagement Consultant, The Spark Global

Trishna Bharadia, BA(hons), MFPM(Hon) is a multi-award winning health advocate and patient engagement consultant working to get the patient voice heard louder, stronger and more effectively throughout the healthcare journey and medicines development lifecycle. From the UK, she works nationally and internationally with multiple stakeholders, including industry, healthcare systems, clinicians and patient organizations. Her work includes consultancy, co-creation of services and information, writing and media outreach. She lives with several long term physical and mental health conditions herself, including multiple sclerosis. She has particular expertise in good patient engagement practices and development of patient engagement strategies, diversity issues in healthcare and clinical research, communicating with patients, and patient involvement in scientific publications. Among the awards she has received, she has been recognized by the UK Prime Minister’s Office with a Points of Light Award for her work with patient communities. She is also a patron/ambassador for several healthcare organisations/charities, including MS Society UK and Lyfebulb, and is a Visiting Lecturer on Patient Engagement at King’s College London university.

More Rare Disease Resources

Role of Patients in the Development of Rare Disease Solutions

Discover why patient engagement is crucial in the development of products to treat rare diseases and how to incorporate patient engagement practices into a patient-centric business strategy.

How to Integrate the Patient Voice in Rare Disease Clinical Trials

Explore some practical suggestions on how to engage patients in the development lifecycle and make the most of their involvement in clinical trials.