ALS Ice Bucket Challenge Progress


North Carolina Clinical Trials

Duke ALS Clinic

Clenbuterol in ALS is open and we are scheduling screenings. This trial will be small (25 subjects). There is a ton of interest both locally and nationally.

REFALS trial is winding down, but with that we are gearing up for the Open Label portion of that trial meaning our three subjects will be screened to continue taking the study drug.

Ibudilast (Combat ALS) trial is not yet enrolling but getting closer; unsure of start date.

Affinergy is an observational trial, with a goal to use blood samples from people living with ALS to develop a new diagnostic tool to detect ALS earlier; it’s one blood draw.

Curcumin (Theracurmin) trial is also still in the regulatory process and not yet enrolling, but making progress; we anticipate late spring for a start.

Neurapheresis (phase I: proof of concept phase) should start in February; this is being run by neurosurgery because it involves performing a lumbar puncture, and we are referring interested patients to the neurosurgery coordinator.

The Healey ALS Platform Trial (from MGH/the Healey Center many sites participating) is an exciting new design with three pharmaceutical treatment arms and one placebo arm, an effort to streamline the research process and find effective treatments faster. This trial should start in the late spring/early summer.

For more information, please contact:
Lisa Harrison
Clinical Research Nurse Coordinator

Wake Forest Baptist Health ALS Center

Wake Forest ALS Center will be starting three clinical trials in the next few months.

Oral edaravone. The IV form of edaravone is the FDA-approved ALS drug, Radicava. This will be the first of our upcoming trials and there will be no placebo group.

The Healey ALS Platform Trial. Following that, we will be starting the Healey ALS Platform Trial. This game-changing clinical trial plan will simultaneously test three anti-ALS drugs using the same format and sharing a placebo group so that much fewer people with ALS will be on placebo. The idea is to be able to continuously enroll people living with ALS into these drug trials until ALS is defeated!

We are also in discussion with a pharmaceutical company about testing a drug that aims to slow progression of ALS by blocking part of the immune system that initiates cell death.

For more information, please contact:
Theresa Johnston-Crews, RN, BSN, MBA

Atrium Health Neuromuscular/ALS-MDA Center

For more information, please contact:
Allison Newell-Sturdivant, BSN, RN, CCRC

Rev. Feb. 2020