The ALS Research Program has many opportunities for current ALS patients, local ALS patients outside of the MHealth Fairview system, remote ALS patients from anywhere in the country, individuals who may be at risk of ALS, and controls.
If you are an ALS patient, you may qualify for both Clinical Research Opportunities and Registry Opportunities. You can learn more about these opportunities below.
If you love someone with ALS, becoming a control in our registry studies is a great way to support ALS research if you are a loved one of somebody with ALS.
Questions about research or interested potential research participation? Email [email protected].
Clinical Research Opportunities
Clinical Research typically involves longitudinal visits to develop or assess potential treatments or biomarkers of ALS.
Multicenter ALS Imaging Study
The purpose of the study is to test new biomarkers of ALS using MRI scans at 3 Tesla (3T). A biomarker is a measurable characteristic that can be used as an indicator of a particular disease state. Identifying biomarkers in ALS will help test new treatments and may help us make diagnoses earlier.
May be a good fit for: local ALS patients
Contact Mia for more information: [email protected].
HEALEY ALS Platform Trial
The HEALEY ALS Platform Trial is a research trial that tests the safety and effectiveness of multiple treatments in ALS. A regimen is a specific course of treatment, each with a different study drug. We are doing this research to find out if different treatments have an effect on Amyotrophic Lateral Sclerosis (ALS). We also want to find out if these treatments are safe to take without causing too many side effects.
May be a good fit for: local ALS patients, ALS patients living within driving distance of the Twin Cities
Contact Valerie for more information: [email protected].
Registry Research Opportunities
Registry research involves collecting data and biosamples (e.g. blood, nasal swabs, etc.) that can be pooled together and used to answer future research questions.
ASSESS ALL ALS Study
We are doing this research to collect a wide range of samples, clinical information, and measurements that will be used for future research into ALS and related neurological diseases. In-person participants will be asked to complete 7 in-person study visits and monthly remote self-assessment activities. Remote participants will complete visits via their own personal device. Access to a personal device (computer and/or smartphone or tablet) that is connected to the internet is needed to complete the monthly remote activities.
May be a good fit for: local ALS patients, remote ALS patients from anywhere in the United States
Contact Claire for more information: [email protected].
PREVENT ALL ALS Study
Individuals who are carriers of ALS causative gene variants have an increased lifetime risk of developing ALS or a related disorder, Frontotemporal Dementia (FTD). We are doing this research to collect a wide range of biofluid samples, clinical information, and other health and wellbeing information to look for measurable differences that will help us understand how and when the body changes in response to ALS causative gene variants.
May be a good fit for: people who are genetically at-risk of ALS (more details available on StudyFinder)
Contact Claire for more information: [email protected].
Biorepository to Support ALS Research in Minnesota
The purpose of the study is to establish and maintain a biorepository of tissue and biospecimen samples relevant to Amyotrophic Lateral Sclerosis (ALS) research. We will obtain, store, and catalogue peripheral blood mononuclear cells (PBMCs), blood and blood components, skin punch biopsy samples, and cerebral spinal fluid (CSF) from people living with ALS, linked to clinical datasets, to advance ALS research.
May be a good fit for: patients with ALS living within driving distance of the Twin Cities, controls who live within driving distance of the Twin Cities
Contact Julia for more information: [email protected].