Researchers are looking for people with ALS (amyotrophic lateral sclerosis), as well as others with motor neuron diseases and healthy volunteers, to participate in the Answer ALS: Individualized Initiative for ALS Discovery study, sponsored by Johns Hopkins University School of Medicine.
Goals of the study include creation of a large repository of induced pluripotent stem cells (iPSCs), motor neuron cell lines and bio-fluid samples for comprehensive genetics and data analyses. (An iPSC is a type of stem cell that has been created from an adult cell and “reprogrammed” back to an immature stem-cell-like state, after which it can be prompted to develop into any type of cell in the body such as a motor neuron. Motor neurons are the muscle-controlling nerve cells that degenerate and lose function in ALS.)
The biological data collected for the trial will be combined with clinical measures of ALS symptoms and progression. The research team has aligned with Google, Microsoft, and others to leverage big data and machine learning technologies to integrate all the data points with the goal to uncover new clues into the causes of ALS, identify subgroups of people with different ALS types, find new therapeutic targets and identify biomarkers.
Trial length is approximately one year, during which participants will make five visits to the study site where they will undergo strength testing, tests to assess respiratory function, cognitive testing, and will have blood samples taken.
In order to be eligible to participate, individuals must be at least 18 years old and meet other eligibility criteria.
Trial sites are located in California, Georgia, Maryland, Massachusetts, Missouri and Ohio.