A new guide from the Les Turner ALS Foundation seeks to expand the number of people with amyotrophic lateral sclerosis (ALS) who participate in clinical research, as well as the diversity of ALS clinical trial groups.
In a May 16 announcement, the foundation said the step-by-step guide was created “to inform people on why clinical research in ALS needs a diverse pool of participants, how to join clinical research, and what to expect when getting involved.”
The ALS & Participation in Clinical Research guide is available in English and Spanish. It takes potential participants through the research process so they “understand what to expect in a clinical trial and how participation affects research.”
The foundation added, “Health-care professionals can use the guide to educate their patients about clinical trials and research studies.”
“We want to empower people living with ALS and their families to make informed decisions about whether to participate and break down the complexity around clinical research,” said Lauren Webb, chief advocacy and outreach officer at Les Turner ALS Foundation.
“It’s important for people with many different backgrounds and experiences to get involved in ALS research,” Webb added. “Many patients don’t know how to participate, and those who do participate don’t usually represent the overall ALS population.”
The guide describes how to find clinical trials to consider, the different phases of a clinical trial, how to decide whether to take part in a trial, and questions to ask when considering clinical trial participation.
The Les Turner ALS Foundation, based in Skokie, Illinois, was founded in 1977 by Les Turner and a group of friends after Turner was diagnosed in ALS. The foundation funds ALS research and supports people living with ALS.
Image: Les Turner ALS Foundation
