The Critical Role Of The Caregiver In Decentralized Trials

By Jennifer Price, Executive Director of Data & Analytics, THREAD and Ryan Fischer, Chief Advocacy Officer, Parent Project Muscular Dystrophy

The longstanding methods used to recruit, treat, and monitor participants in traditional clinical trials can drastically limit a study population. Many potential participants do not have access to reliable transportation or a local participating clinic or hospital. In many studies, especially in certain populations such as the very young or elderly, data about the patient’s responses and safety can only be obtained by those close to the patient. In many instances, patient data collection involves multiple caregivers, which is challenging in any study.

In order to provide the most accurate data, the industry must include caregivers to facilitate home-based data collection, and provide the clinical team details about the participants status using telehealth technologies, in order to include all caregivers that are involved in the participants care.

Safe and effective treatments to enhance quality of life for patients should be a top priority. Caregivers are the biggest support system for many patients, and the industry needs to create an efficient process that generates quality data and gives caregivers the necessary support.