ALS/MND NATURAL HISTORY CONSORTIUM
The mission of the ALS/MND Natural History Consortium is to collect real-world data about ALS, make it available for ALS research and inform clinical trial design. This will lead to better understanding of the disease and enable improved care practices for people living with ALS.
What is the Consortium?
The ALS/MND Natural History Consortium consists of academic medical centers in the U.S. and Europe committed to studying the natural history of ALS and other related motor neuron diseases. The ALS/MND Natural History Study is a multidisciplinary clinic-based registry which prospectively and longitudinally captures important clinical information about the disease process from people living with ALS.
Who is part of the Consortium?
The ALS/MND Natural History Consortium currently consists of the following sites:
Henry Ford Health Systems
University of Minnesota
Providence ALS Center in Portland, Oregon
Saint Louis University School of Medicine
University of Florida Gainesville
Neuromuscular Omnicenter (NEMO) in Milan, Italy
MDA/ALS Center of Hope, Temple University
At present, over 1000 people living with ALS have enrolled in this natural history study. Data collection, curation, and analysis is through NeuroBANK, a flagship clinical research platform which is run by the Neurological Clinical Research Institute at Massachusetts General Hospital.
What are the goals of the Consortium?
ALS is a rare, clinically heterogeneous degenerative neurological condition that results in progressive disability and ultimately death from respiratory failure. There is an unmet need to understand the demographic characteristics, natural history and the disease management of people living with ALS patients in the real world. The ALS/MND Natural History Consortium collects these data prospectively from individuals followed in the multidisciplinary care setting. The information will advance knowledge of ALS in the real-world setting and is available for researchers in the Consortium and worldwide to study ALS to help us improve treatment and clinical care.
How does the Consortium do its work?
All patients who have a diagnosis of ALS, MND or other motor neuron diseases (e.g. primary lateral sclerosis, progressive muscular atrophy, progressive bulbar palsy) are eligible to be enrolled during a routine multidisciplinary clinic visit. Participating centers endeavor to offer participation to all people living with ALS/MND who attend their clinics. With informed consent, they are then assigned a global unique identifier (GUID) to allow for de-identification of data. Standard clinical information is gathered on each patient including gender, age of symptom onset, site of onset, genetic testing results, if applicable, use of concomitant medications, examination data, ALSFRS-R scores, clinical milestone data (e.g. time to feeding tube placement or time to non-invasive ventilation) and many other data points.
Why is the Consortium important to the ALS community?
The ALS/MND Natural History Consortium will be used by academic ALS centers and pharmaceutical companies in several ways: (1) to more fully understand the clinical progression of ALS on a large scale; (2) to inform better clinical trial design and; (3) to encourage development of effective therapies for ALS.