What is a Natural History Study?
"Natural history" refers, roughly, to the way a condition progresses over time in the population of people living with that condition. Our study aims to provide high-quality and detailed information about a broad range of people living with ALS. This information has a wide range of uses in helping us understand this disease to improve care in ALS.
Our study combines natural history information shared by people living with ALS with blood samples that are being used in many ways. These include testing new ways to monitor changes in a person's condition, which in turn can help with testing new treatments and in other ways. Samples are being stored for future research, and are particularly valuable because they are linked to natural history information. We are also developing ways to predict how ALS will progress in individuals and in groups of individuals, which will help in both personal planning and in testing new treatments.
What does this research mean to me?
For many people living with ALS and their families, participating in research provides an opportunity to contribute to progress in understanding, and hence treating, ALS.
What is being done with the information?
Information from people who participate in our study is used to answer research questions about ALS. These add to our knowledge about the condition and about current care for people living with ALS. This information is also being used to help plan future studies, and to evaluate current treatments. Examples can be seen under the "data and research output" tab.
Personal identifying information, such as names and dates of birth, are removed from the information used in this study, to minimize the risk that individuals could be identified from the information shared.
