NEWS RELEASE

Department of Defense
United States Army Medical Research and Development Command
Congressionally Directed Medical Research Programs

Released: May 30, 2023

Amyotrophic Lateral Sclerosis Research Program Recognized for Including Consumer Reviewers in Two-Tier Review System

CDMRP is recognized by The Morris ALS Principles organization for its inclusion of Amyotrophic Lateral Sclerosis consumer reviewers
as panel members within the two-tier review system of the Amyotrophic Lateral Sclerosis Research Program.

FORT DETRICK, Md. – The Congressionally Directed Medical Research Programs’ (CDMRP) Amyotrophic Lateral Sclerosis Research Program (ALSRP) received a Certificate of Appreciation from The Morris ALS Principles in recognition of the ALSRP’s inclusion of consumer reviewers, alongside scientific reviewers, on application review panels as part of the two-tier review system.

“Our consumer reviewers provide critical input throughout our program cycle, and we remain grateful for their tremendous contributions,” U.S. Army Col. Sarah B. Goldman, director of CDMRP, said. “May is ALS Awareness Month, and we appreciate the valuable input from those with lived experiences in advancing ALS research and therapeutics. CDMRP’s ALS Research Program funds promising research with the potential to make a true impact on those diagnosed with ALS.”

Consumers represent the collective views of survivors, patients, Family members, caregivers, and others affected by or at risk for certain conditions, diseases, or injuries. Within the two-tier review system of CDMRP, consumers serve as full voting members and contribute to maintaining the focus of the respective program on relevant and impactful matters involving the affected community.

“Your program demonstrates compassionate leadership and action that will make a difference. We are so grateful for the respect that you have shown [people living with] ALS and those who love them,” The Morris ALS Principles group stated in their letter to CDMRP ALSRP.

According to their website, The Morris ALS Principles was founded with the intent to encourage and provide guidance for those living with ALS to incorporate their perspectives and input in “matters directly affecting them.”

Nearly half of those diagnosed with ALS has a life expectancy of three years and 90% of those diagnosed with ALS have a life expectancy rate of five years, according to The Morris ALS Principles. In their letter to CDMRP, The Morris ALS Principles stated the accolade is “for including people living with ALS on all scientific advisory bodies related to ALS research” within the ALSRP.

Established in fiscal year 2007, the ALSRP strives to improve treatment and find a cure for ALS. The ALSRP has included people with lived ALS experience as consumer reviewers of research awards to help with providing input on recommendations based on lived experience of the disease.

More recently, the ALSRP required at least one community partner, such as a person with ALS, Family member and/or caregiver, representative of a community-based organization, be named in all FY23 ALSRP Pilot Clinical Trial Award applications to establish effective and equitable partnerships with the patient community. These community partners will provide advice and consultation throughout the planning and implementation of the research project.

For more information about the CDMRP, the ALSRP, our other research programs, and research highlights, please visit the website at https://cdmrp.health.mil.

Point of Contact:

Congressionally Directed Medical Research Programs Public Affairs
301-619-7783
https://usarmy.detrick.medcom-cdmrp.mbx.cdmrp-public-affairs@health.mil

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