July 21, 2014

Clinical Research

Current Trials

Longitudinal Diffusion Tensor MRI in ALS (?)
Contact Senda Ajroud-Driss MD
s-ajroud@md.northwestern.edu

Pyrimethamine in SOD1 familial ALS
Contact Senda Ajroud-Driss MD
s-ajourd@md.northwestern.edu

Contacts at the Lois Insolia ALS Center

Pat Casey
ALS Research Study Coordinator
pcasey@nmff.org
312.695.7950

Jennifer Armstrong
ALS Nurse Coordinator
jarmstrong@nmff.org
312.695.7950

Other Research Resources

Search for Clinical Trials
Provides up-to-date information on FDA approved ALS clinical trials.

National ALS Registry
Persons with ALS (PALS) enrolled in the National ALS Registry now can get emails about new research studies. ATSDR (Agency for Toxic Substances and Disease Registry) will send emails about ALS research notification only to PALS who agree to get such emails. PALS will get emails only about studies they are eligible for. We will not send information about PALS to the researchers. PALS will have to contact researchers directly to join or learn more about a study.

If you are part of the Registry and want to get emails about research studies, you must change your account settings and agree to get the emails. PALS who are not part of the Registry but wish to be should create a registry account. New registrants can sign up for the research emails when they register.

Questions about research trial emails or about how to register?
Call: 1-877-442-9719
Email: ALSSystemAdmin@cdc.gov
Operating hours are Monday through Friday, 9am to 6pm ET

NEALS Consortium
The mission of Northeast ALS Consortium (NEALS) is to rapidly translate scientific advances into clinical research and new treatments for people with ALS and motor neuron disease. On the NEALS Consortium website you will find information about clinical trials that are part of this consortium, a patient blog and a way to connect to talk to a NEALS Expert from the website. The experts are available to chat with the patient by phone to see if they might match any current NEALS studies.

Other Useful Websites
ALS Forums
Patients Like Me
ALS Untangled