Resources

Compassionate Care ALS takes a comprehensive approach to integrating our CARE with research institutions, ALS clinics and hospitals. We work to ensure appropriate care and education for those individuals and families who are newly diagnosed as well as those currently enrolled in clinical trials. We also provide information to those interested in existing trials and those who wish to be informed about research efforts. We work with our current clients to connect them with clinical trials at ALS ONE partner organizations.

For clinical trials occurring at our ALS ONE partners, Massachusetts General Hospital, ALS TDI and UMass Medical Center we offer our families along with ALS ONE partner families rides to trials in our handicapped accessible vans. For more information about our transportation program, please contact Shannon Carey at Shannon@ccals.org or (508) 444-6775.

Neurological Clinical Research Institute (NCRI) MGH is proud to be a part of the ALS ONE partnership, providing innovative care and performing pioneering research to cure ALS. Our clinical and research programs are tightly aligned and synergistic.

The mission of the MGH multidisciplinary ALS clinic is to be a place of caring and hope. It is where we lay the foundation for a partnership between providers, researchers, people with ALS and their caregivers and loved ones. And, together, through care, we seek a cure. The mission of our research institute, the MGH NCRI, is to translate scientific discovery into new ALS therapies as rapidly as possible. Here, we bring potential therapies to research participants and collaborate with researchers around the world to seek novel avenues to a cure. For information about clinical trials please visit massgeneral.org/neurology/als/research/als-clinical-trials. Or contact Access Nurse, Katie Tee (617) 643-6249 or ktee@partners.org.

We are excited to announce the opening of the HEALEY ALS Platform Trial at the MGH site. Please click here to fill out a brief Patient Interest Form to inform us of your interest in participating in the HEALEY ALS Platform Trial at MGH.

Important information about the enrollment process at MGH for the HEALEY ALS Platform Trial:

We are grateful for the interest and support we have already received for this trial. We will do our best to connect with everyone as soon as we are able to do so. To communicate with us about the HEALEY ALS Platform Trial at MGH, please send emails to MGHSiteHealeyPlatform@mgh.harvard.edu.

1. We encourage you to reach out to local HEALEY ALS Platform Trial sites that are geographically accessible to you, by emailing the contact person listed on clinicaltrials.gov by clicking here.
2. We thank you for your patience with us while we put safety measures in place that will allow us to conduct the HEALEY ALS Platform Trial safely in the time of COVID-19. We think of all of you as heroes and we are excited to work with you to move ALS research forward with this innovative new trial.

Thank you so much for your interest and we will be in communication soon.

The MGH Site for the HEALEY ALS Platform Trial

UMass Medical School offers the latest in research and clinical trials. Patients benefit from advanced diagnostic and treatment options that come from this research. Learn more about basic and clinical research at UMMS.

See more here. Or contact Diane McKenna-Yasek at (508) 856-4697.

ALS TDI Precision Medicine Program

The ALS Therapy Development Institute operates the world’s first and largest precision medicine program in ALS. The goal of the program is to identify subtypes of ALS and the specific compounds that treat each type to advance the most effective treatments into clinical trial.

For more information visit www.alstdi.org/precision-medicine-program. Or contact Robert Goldstein at rgoldstein@als.net or (617) 441-7200.

Alexion (NASDAQ: ALXN) is a global biopharmaceutical company focused on serving patients and families affected by rare diseases through the discovery, development and commercialization of life-changing therapies.

alexion.com

An Efficacy and Safety Study of Ravulizumab in ALS Participants

Champion ALS Study

The goal of this study is to find biomarkers in blood and urine to show why Radicava (Edaravone) is slowing ALS symptom progression. Radicava was approved by the FDA as a treatment for ALS in May of 2017 and has been shown to slow the loss of physical function in ALS. In this research study, we want to learn what changes happen in patients with ALS that can be seen in blood and urine when they take Radicava. Participants must obtain insurance approval for Radicava to participate in this biomarker study.

For more information click here.

If you are interested in hearing more details and/or if you would like to know if you are eligible to participate in this study, contact:

Principal Investigator: Suma Babu, MD, MPH

Cassandra Lieberman
617-643-7428
Clieberman1@mgh.harvard.edu