As researchers search for new insights into Amyotrophic Lateral Sclerosis (ALS), there is an ever-greater need for data from clinical trials and research studies. However, many people living with ALS are not certain how to get involved with clinical research, and the demographics of current ALS clinical trial participants are not representative of the full population of people living with the disease worldwide.
To address the critical need for diversity and accessibility in ALS clinical trials and research studies, the Illinois-based Les Turner ALS Foundation has published a new guide to ALS & Participation in Clinical Research, now available in both English and Spanish.
"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.
Published on May 13, 2024, during ALS Awareness Month, this new guide was developed in partnership with Boston-based NEALS (Northeast Amyotrophic Lateral Sclerosis Consortium), the world's largest consortium of clinical research sites dedicated to rapidly translating scientific advances into clinical research and new treatments for people with ALS and motor neuron disease (MND).
Clinicians and healthcare professionals can use this guide to educate people living with ALS, their families, and their caregivers about what to expect when participating in an ALS clinical trial or research study – and how participation affects the broader field of ALS research. The authors aim to enrich ALS research with diverse perspectives and data, which are essential for developing more effective treatments and ultimately, finding cures for ALS.
With clear, detailed descriptions of the clinical trial phases, the various types of studies, and the rights and expectations of participants, this comprehensive guide demystifies ALS clinical trials and research studies. It includes insights from healthcare professionals alongside real-life experiences from people living with ALS, offering a broad and wide-ranging overview of the clinical research landscape.
Whether someone living with ALS is considering participation in a clinical trial for the first time or looking to understand more about the research process, this guide is designed to help them navigate their options and understand potential impacts on their treatment journey.
Increasing participation in clinical research is a critical step at clinical research sites across the U.S., including the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine in Chicago, supported by the Les Turner ALS Foundation.
"It's important for people with many different backgrounds and experiences to get involved in ALS research," said Webb. "When people of all ages, genders, races, and ethnicities participate in research, scientists can learn more about how ALS affects everyone — and develop treatments that work for as many people as possible.
