Video: How do people living with rare diseases feel about clinical trials in 2020?

November 2020

Faced with the pandemic, the patient community overwhelmingly recognizes the benefits of a decentralized approach to clinical trials

In a year like no other, the Xperiome team surveyed 165 community members across four rare conditions to understand drivers and barriers to clinical trial participation.

Watch this video to see what we found: 

Video Transcript

How do people living with rare diseases feel about clinical trials in 2020?

We surveyed 165 community members across four rare conditions.

Here is what we found: 86% of people surveyed are interested in taking part in a clinical trial now or in the future. Among those who said they might consider clinical trials in future, we explored which factors represent the biggest barriers. And we found it’s not just concerns around COVID-19 stopping people from taking part in a trial right now, but also not knowing where to find information about clinical trials.

While the clinical research industry has been experimenting with decentralized and hybrid models for a few years, the COVID-19 pandemic has accelerated this shift. We asked our communities how they felt about these evolving trial types. Given the choice, some participants indicated a preference for receiving the study medication and having monitoring appointments in their own homes, or at a hospital closer to where they live. But even more participants would opt for a combination of clinic visits, at-home visits, and regular appointments at nearby hospitals – underlining the promise of both hybrid and fully decentralized models.

For patients, the attractions of decentralized trials include:
  • Convenience, through having more of the study take place at home, and less time traveling
  • And the use of technology, both to communicate with research staff and to have their health monitored
Notably, 87% of participants expressed no concerns at the prospect of a decentralized approach to trials.

While the pandemic has turned many aspects of clinical research upside down, the rare disease community do remain interested in clinical trial participation. Information and education can overcome potential barriers among those expressing a potential interest in trials in future. And survey participants overwhelmingly recognized the potential benefits of decentralized and hybrid models.

To find out what else our community members have to say, please contact us now