Local Research & Clinical Trials
Clinical trials have proven to be the fastest and most reliable way of finding effective new therapies for ALS. The goal of clinical trials is to answer specific scientific questions to find better ways to prevent, detect or treat ALS or improve care for people with ALS.
What is a clinical trial?
A clinical trial is a research study that follows a specific set of rules (protocol). This research includes using newer, promising treatments and the best methods currently available. People with ALS and their family members and caregivers are essential partners in this research. Clinical trials are often held in hospitals, clinics or doctor’s offices, under the direction of researchers. Some studies are held at multiple locations. The research team will explain where you need to go and how often you will need to follow up.
How do clinical trials help?
Taking part in a clinical trial may help you and may also help improve treatment for patients in the future. Being part of a clinical trial may give you early access to new drugs and treatments. When people participate in a clinical trial, it may help us find new treatment methods sooner.
What is it like to be on a clinical trial?
- You will be given detailed information about the clinical trial by a member of the health care team, including why the trial is being done and what to expect. You and your family will have the opportunity to discuss your needs and have your questions answered.
- It is important for you to follow the clinical trial protocol to have accurate results. The protocol will describe:
- Exactly how the clinical trial will be done
- Who may sign up
- What treatment is used
- How the treatment is given
- How often you will need follow up visits to evaluate the treatment
Who pays for a clinical trial?
Generally, there are no costs associated with participation in a clinical trial. You and your caregiver may also receive a stipend for your time. The stipend varies by trial so be sure to ask the Study Coordinator whether or not the trial you are participating in provides a stipend.
What if I decide I want to quit being on a clinical trial?
If you decide that you no longer want to take part in a clinical trial, you can stop at any time. If a person leaves a trial, they should talk to their doctor about other treatment options.
Can I participate in a clinical trial in one medical facility and attend an ALS multidisciplinary clinic at another?
Yes. You do not have to attend clinic at the location where a clinical trial is taking place. This provides flexibility for you so that if you qualify for a trial in an Ohio location, you do not have to change where you are being seen for your multidisciplinary clinic visits – you can participate in both places – one location/provider for your multidisciplinary care and one location/provider for your clinical trial.
How do I find information on a clinical trial?
- Sign up for the National ALS Registry, take the surveys and check the box that you would like to be notified of trials for which you may qualify.
- There are additional ways you can obtain information on clinical trials. Talk with a member of your health care team if you are interested in participating in a clinical trial. If your situation matches with a clinical trial that is currently available, you may be eligible to take part.
- National Institutes of Health- http://www.nih.gov/health/clinicaltrials
- Northeast ALS consortium-https://neals.org/als-trials/als-clinical-research
- The National Library of Medicine-clinicaltrials.gov/als
- The ALS Association-https://www.als.org/research/clinical-trials-for-patients
- ALS ATLAS study- SOD1 variant research
OhioHealth ALS Multidisciplinary Clinic is Currently Recruiting for the following Clinical Trial
- Radicava (Edaravone) Findings in Biomarkers from ALS (REFINE-ALS)- https://www.clinicaltrials.gov/ct2/results?cond=ALS&term=refine&cntry=US&state=&city=&dist=
- Contact information for the research coordinator at OhioHealth
- Christina Fischer-614-788-3884, email@example.com
The Ohio State University Wexner Medical Center is Currently Recruiting for the following Clinical Trials
- Study of soluble factors in the cerebral spinal fluid in individuals with ALS
- Skin Fibroblast Isolation for the Derivation of Induced-Pluripotent Stem Cells for Tissue Culture Models of Neurological Disease
- A Phase 1-3 Study to Evaluate the Efficacy, Safety, Pharmacokinetics and Pharmacodynamics of Intrathecally Administered ION363 in Amyotrophic Lateral Sclerosis Patients with Fused in Sarcoma Mutations (FUS-ALS)
- ALS Healey Platform Trial -
- Contact information for research coordinators at Ohio State:
- Cheyenne Grove, 614-293-9587 Grove@osumc.edu
- Sarah Heintzman, Nurse Practitioner-614-293-4973, Heintzman@osumc.edu
- Jennifer Roggenbuck, Genetic testing, Roggenbuck@osumc.edu
The University of Cincinnati will be recruiting for the HEALY Platform Trial in the near future. Contact information for the research coordinator at UC:
- Ashley Smith- 513-558-4874, FISHEAL@ucmail.uc.edu