Rare disease patients often face more obstacles and receive less aid than those impacted by more common conditions. There are many reasons for this inequity, but more research must be done to understand it. Fortunately, Scout Clinical has recently conducted a focus group of rare disease patients who had undergone clinical trials in an effort to better understand and improve their experiences.
About the Study
Researchers aimed to understand how participation support differs among various trial participants, specifically those impacted by rare diseases. Scout Clinical teamed up with ICON plc in order to do so.
Upon conducting the focus group, the researchers uncovered the following results:
- 30% of the participants stated that emotional counseling and support would make taking part in a study easier.
- Rare disease patients face a number of obstacles when taking part in a trial, which may be financial, emotional, psychological, logistical, and/or physical.
- Support services helped rare disease patients handle these burdens and aided participation.
This research confirms what we already suspected. More should be done for rare disease patients, especially when it comes to the clinical trial process. Factors such as small patient populations and minimal funding already present enough obstacles, and the patient experience during clinical trials brings additional issues.
If additional services and support are brought to rare disease patients throughout the clinical trial process, these patients will be more likely to participate. Motivating them is not enough, there must be concrete support to make studies less of a burden.
You can find the full focus group results here, and the source article here.
