Natural History Studies

Overview

Natural history studies in amyotrophic lateral sclerosis (ALS) involve observing and documenting the progression of the disease in individuals over time.  

These studies aim to establish a baseline understanding of the typical course of ALS, identify biomarkers, classify subtypes, inform clinical trial design, assist in patient counseling, define outcome measures, and contribute to therapeutic development.  

By tracking the disease's natural evolution, researchers gain valuable insights into its patterns, variability, and factors influencing its progression. This information is crucial for advancing ALS research, improving patient care, and developing targeted therapies. 

There are several ways to participate in Natural History Studies. One such way is by participating in a specialized registry which addresses specific research questions using data voluntarily provided by individuals with ALS. Registries may include details like age, race, gender, risk factors, treatments, and disease progression. Researchers use registry data to identify trends, monitor outcomes, and study standard care. 

The National ALS Registry, established by Congress in 2008, collects information to estimate new ALS cases annually in the U.S. It helps understand who is susceptible to ALS and the factors influencing the disease. Enrolling as many individuals with ALS as possible in registry databases is crucial for a comprehensive understanding. Learn more about joining the National ALS Registry. 

Healthy individuals with a family history of ALS may also chose to participate in observational research. Several opportunities are included below: 

• The ALS Families Project focuses on gathering crucial information from families affected by Amyotrophic Lateral Sclerosis (ALS) to advance research and understanding of the disease. 
• The DIALS (Dominant Inherited ALS) Network seeks to understand the clinical and biological changes that may happen in adults who have an ALS causative gene and are asymptomatic (not showing symptoms).
• Pre-fALS (Pre-symptomatic Familial ALS) enrolls healthy individuals with a familial ALS background, aiming to investigate the environmental and genetic factors that elevate the risk of developing the disease.