The Role of Caregivers in Clinical Trials: A Focus on Rare Conditions

Executing trials successfully and obtaining quality, reliable data necessitates the engagement of not just the patient but the patient’s entire ecosystem. This is especially true in the case of rare neurological illnesses where the caregiver plays an indispensable role in the day-to-day support of the patient before, during and after clinical trial involvement. Subtle changes in a patient’s mood, behavior and even physicality may be picked up by a caregiver, even though the patient may not identify, recall or be able to articulate the same, due to their disease state.

During the clinical trial process, what are the challenges in winning the support of these caregivers? How much of a burden is it on them? How much data can actually come from the caregiver? And how do we care for the caregivers so they can give unbiased representations, even though they may have become fierce advocates for their loved ones?

This webinar addresses these questions and alerts drug developers of the comprehensive end-to-end solutions that your contract research organization (CRO) can provide for the lifecycle of the trials.

In this webinar, attendees will learn:

• How to address the challenges presented with patients who have rare, neurological conditions, as well as the unique requirements associated with other special patient populations
• The impact on family, caregivers and others who have the best interests of the patient at heart
• The process of gaining consent forms and the requirements for educational materials, contingency planning
• Ways to lessen the burden on both patients and caregivers
• Specific tips that may help in protocol planning and compliance

Speaker

Lisa Dilworth, VP, Rare & Orphan Diseases, Synteract

Lisa Dilworth, Vice President for Rare & Orphan Diseases at Synteract, has 18+ years of experience in Phase I-IV drug development working directly with patients, their families, physicians, sponsors and other key stakeholders. Her extensive experience in study design, eligibility criteria, appropriate patient populations, country/site mix, endpoint selection and overall program strategy brings both theoretical and practical knowledge to conducting studies in rare and orphan diseases. Her experience includes prior work as a study coordinator and neurophysiology technician with a patient-focused mindset and strong relationships with advocacy groups. Her current research spans various therapeutic areas with specialties including neurology, metabolic and endocrine, ophthalmology, oncology and hepatology.

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