Decentralized trials can overcome the challenges of rare disease patients

By Ed Miseta, Clinical Leader

There are 400 million people worldwide who are impacted by more than 7,000 identifiable rare diseases. While individual rare diseases are uncommon, approximately 5% of the world’s population suffers from one. For many of those patients, travelling to a clinic to participate in a trial can be difficult. A new report from technology provider THREAD details how many of the clinical challenges posed by rare disease trials can be alleviated by decentralized trials.

Many patients suffering from rare diseases possess symptoms that impact their mobility. That increases the burden of travelling to clinical sites, which increases the difficulty of sponsors to recruit patients to participate in studies.

The use of decentralized trial technologies, such as telehealth, eCOA, ePRO, eDiaries, wearable devices, and patient apps can move many aspects of trial participation from the clinic to a remote location, such as a patient’s home. This makes trial participation easier for patients and caregivers while maintaining data integrity. Still, the report notes many sponsor companies have been slow to adopt decentralized approaches in rare disease trials. Read more …