Modifiable barriers to enrollment in American ALS research studies

Abstract

Enrollment in ALS research studies is surprisingly low. Here we report on two online patient surveys that help identify some of the reasons. These include failure to invite patients to enroll, especially patients who have already participated in prior studies. Also included are patient concerns about the cost of participation, and confusion about several aspects of studies being offered. Along with prior work, these data suggest specific steps that can be taken to improve enrollment.

Key words::

• Clinical trials
• epidemiology
• ethics

Acknowledgements

We are grateful to Tim Vaughan and Catherine Brownstein for assistance in data analysis and patient recruitment, respectively.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.