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ALS Research

The Emory ALS Center is actively engaged in research that ranges from basic questions about the causes of ALS to clinical trials of new drugs to treat people with ALS.  Please read below to learn more about our research program and projects. 

In our laboratories: Dr. Glass' laboratory in the Center for Neurodegenerative Disease is working on the basic mechanisms of motor neuron disease as well as potential new treatments for ALS.  Your contributions, whether monetary or participation in one of our studies, are essential for our continued productivity.  Thank you!

Dr. Glass has been actively collaborating with other ALS investigators around the world on multiple projects examining ALS genetics, immunology, neuropathology, and animal and cellular models of ALS.  Dr. Glass also continues his work on discovering biomarkers of ALS, which necessitates the participation of PALS and CALS.  We are collecting blood and spinal fluid samples from patients for our research.  Family members and non-related adults are also important participants in our studies, since we need to compare our results between people who have ALS and those who don’t. Publications by Dr. Glass. 

Dr. Christina Fournier was recently awarded a 5-year research grant from the Veterans Administration.  Her project is to develop a new questionnaire to measure the progression of ALS.  The questions will be related to function, similar to the current ALS Functional Rating Scale (ALSFRS) that is performed at each clinic visit.  The hope is that Dr. Fournier’s new scale will be more sensitive to functional changes in PALS, making it useful both for clinical care and for research trials. Please consider participating in this important effort by filling out questionnaires. Publications by Dr. Fournier.

We at the Emory ALS Center understand the dire need for effective treatments for ALS.  We only can help solve the problems we face in developing new therapies for ALS through rigorous scientific investigation. This type of investigation requires the efforts of teams of clinicians and scientists around the world, adequate research funding, and time. 

Most importantly, we need the partnership of our patients and their families to study and better understand your disease!

Visit our website regularly to learn about upcoming clinical research and trials we are offering.

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Clinical Trials Opportunities: (treatment with an experimental drug)

Acthar: ENROLLING--This phase 2 placebo-controlled trial sponsored by Mallinckrodt will test the safety, tolerability, and pharmacokinetics of an investigational injectable drug in patients with ALS. Participants will have approximately 12 study visits (participation in the open label extension will add an additional 5 visits) and a site phone call.  For information about this study, contact Meraida Polak at 404-778-3807 or mpolak@emory.edu .

Centaur: ENROLLMENT CLOSED-- Amylyx Pharmaceuticals is offering a phase II trial investigating the safety and tolerability of a new combination of drugs (already FDA approved for other diseases) in ALS.  AMX0035 may help preserve certain nerve cell components and reduce inflammation and oxidative damage to neurons. The study will have both a treatment arm and placebo arm and is anticipated to take place over 8 months and include 7 study visits and 4 phone calls. Testing includes muscle strength, EKG, blood draws and breathing tests.  For information about this study, contact Arish Jamil at 404-727-1273 or Arish.jamil@emory.edu

OrionPharma Trial of Levosimendan in ALS (RefALS): ENROLLING -- OrionPharma is sponsoring a Phase 3 study of the drug levosimendan in people with ALS. Levosimendan is an FDA-approved medication for heart failure that acts by causing the heart muscle to beat more strongly. The hope is that the drug, when given to people with diaphragmatic weakness secondary to ALS, will strengthen the action of the diaphragm and result in improvement in breathing. Eligibility criteria include having had symptoms of ALS for between 12-48 months, ability to swallow study drug, and vital capacity between 60-90%. Use of Trilogy is not permitted, nor is edaravone and certain other drugs. People with certain cardiac diseases and/or COPD may not participate.  The trial will run over 48 weeks and require 8 visits to the site plus follow-up telephone calls. For further information please contact Jane Bordeau at 404-727-1679 or jrbord@emory.edu .

Genentech GDC-0134:  LIMITED ENROLLMENT--This is a first-in-human study to examine whether the drug GDC-0134 is safe and tolerable in people with ALS.  Subject groups will start at a low dose of drug and subsequent groups will be given higher doses of drug if safety of the prior dose is established.  There is a placebo group.  Participants may only participate in a single dosing period of 28 days, then come in for 2 additional followup visits over 1 month. For information contact Jane Bordeau, RN at 404-727-1679 or jrbord@emory.edu .

Genentech GDC-0134 Open-Label Extension—LIMITED ENROLLMENT—Genentech will be offering an open-label extension of the GDC-0134 study detailed above. This study will be dosing with the same drug, but there will be no placebo group: all participants will receive active drug. The study will require screening and will employ the same eligibility criteria as the main study.  The study period will be approximately 12 months, including a 4-week follow-up period. Participants from previous phases of the study are eligible as well as new participants.  For further information please contact Jane Bordeau at 404-727-1679 or jrbord@emory.edu .

ALS caused by genetic mutations:  Emory will soon be enrolling for gene therapy studies designed to treat patients with mutations in the SOD1 and C9orf72 genes. For more information contact Meraida Polak at 404-778-3807 or mpolak@emory.edu .

 

Clinical Research Opportunities: (no experimental drug treatment)

Research Study

Study Details

Contact Person

Clinical Research in ALS (CRiALS)

·    To learn more about neurological disorders

·    To contribute to Project MinE

·    For ALS patients, blood relatives and healthy unrelated volunteers

·    Procedures include donation of a blood sample, skin sample and/or spinal fluid and an information questionnaire

Arish Jamil

404-727-1273

Arish.jamil@emory.edu

 

www.projectmine.com 

 

Answer ALS - no longer recruiting

·    Create a comprehensive registry of over 1000 pALS

·    Create stem cells from each

·    Use the cells to identify causes and subtypes for targeted treatments

·    For all ALS and PLS patients

·    Procedures include donation of blood and (optional) spinal fluid, assessments of strength and cognition

·    Visits every 3 months for 1 year, phone assessments thereafter

Arish Jamil

404-727-1273

Arish.jamil@emory.edu

 

www.AnswerALS.org 

 

HAVE YOU ENROLLED IN THE NATIONAL ALS REGISTRY??

registry 

www.alsa.org/als-care/als-registry  

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