Clinical Trials Recruitment and Retention Team

Clinical trials are essential in the movement to end ALS. With so few ALS treatments, clinical trials allow people living with ALS to both access treatments and advance the science of ALS. 

Unfortunately, the ALS community faces far too many barriers to accessing clinical trials, which can lead to the inability to adequately fill these important trials. These barriers can range anywhere from doctors simply not providing information on trials, to trials taking place too far away, to distrusting researchers and medical professionals.

Retaining clinical trial participants can also be difficult. Some individuals may find themselves unable to give the required time or afford the travel costs. They may experience unpleasant side effects or feel uncomfortable with the lack of patient-centric practices in a trial.

Click here to read more about barriers to recruitment and retention in clinical trials. 

Additionally, the clinical trial space lacks diversity and representation. Many racial and ethnic minorities, linguistic minorities, and individuals in geographically under-resourced areas have historically been underrepresented in clinical trials. Besides causing adverse consequences for the individual members of these groups, this lack of diversity in trials also makes for less well-rounded research.  

So, what is to be done about all this, and how can you help? 

This is where the I AM ALS Clinical Trials Recruitment and Retention Team comes in. They understand how important it is to fill clinical trials, retain participants, and make the clinical trial space more diverse and inclusive. They want to help educate all stakeholders across the ALS landscape about clinical trials and barriers to access and retention. And they want to transform ALS clinical trials to be more accessible and patient-centric for all people living with ALS. 

If this sounds like a movement you would like to be a part of, join the team every other Thursday at 2 PM ET to help make these important goals a reality.