Patient engagement in research is increasingly recognized as important across many countries and fields. In 2008, we conducted surveys that suggested a need for improved patient engagement in ALS research. We decided to create an ALS Clinical Research Learning Institute (ALS-CRLI) to facilitate direct interactions between researchers and people with ALS and their caregivers, toward ultimately improving engagement.
Trial News & Events
People with amyotrophic lateral sclerosis with a common mutation in the interleukin 6 receptor (IL6R) gene appear likely to have more severe disease symptoms and faster progression than ALS patients without this inherited gene variant, a study reports.
The Sean M. Healey & AMG Center at Mass General will launch the first platform trial for amyotrophic lateral sclerosis (ALS) to accelerate the development of effective and breakthrough treatments for people with ALS.
Due to the success of the ALS GAP pilot program, NEALS has raised additional funds to continue this service.
The Robert Packard Center and Answer ALS will host a joint Meet the Experts webinar on Thursday, May 30 at 2:00pm. Featuring Jennifer Roggenbuck, MS, LGC (Ohio State University) and Sami Barmada, MD, PhD (University of Michigan).
Nominations are now being accepted for the 2019 Clinical Research Learning Institute!
Members are welcome to join us on Tuesday, May 7th from 07:15am - 08:15am for a NEALS Consortium satellite meeting at the 71st American Academy of Neurology Annual Meeting!
The NEALS ALS Genetic Access Program (ALS GAP) provides clinical genetics services to pALS who are under the care of a registered NEALS clinician. Funded by the Muscular Dystrophy Association, The ALS Association, and Biogen, and administered by NEALS, this program includes clinical genetic testing and genetic counseling via telemedicine. There is no cost to the patient or clinic.
Over a dozen NEALS members chaired the daily sessions over the three-day event, and 15 members presented platforms during the meeting. Of the more than 500 posters presented during the event, over 60 were submitted by NEALS members.
Brian Wainger, MD, PhD, of the Healey Center for ALS at Massachusetts General Hospital (MGH) presented initial, top-level results of a recently completed phase 2 clinical trial of ezogabine (also called retigabine) on December 9 at the Motor Neurone Disease Association annual meeting in Glasgow, Scotland.