Data of thousands of ALS patients made available for analysis

This came up in my inbox. An interesting and welcome initiative, making thousands of ALS patients’ medical data available for analysis.

It doesn’t seem to have any sequence data (so not a bioinformatic database), but there are heaps of biomedical data in which to sink your statistical teeth.

Dear All,

My name is Hagit Alon and I am a scientific officer at Prize4Life Israel.

Prize4Life is a non-profit organization that is dedicated to accelerating treatments and a cure for ALS (also known as motor neuron disease or Lou Gehrig’s disease).

Prize4Life was founded by an ALS patient, Avichai Kremer, and is active in Israel and in the US.

Prize4Life developed a unique resource for bioinformatics researchers: The Pooled Resource Open-access ALS Clinical Trials (PRO-ACT) database.

This open-access database contains over 8500 records of ALS patients from past Phase II and Phase III clinical trials, spanning on average a year or more of data.

The data within PRO-ACT includes demographic data, clinical assessments, vital signs, lab (blood and urine) data, and also survival and medical history information. It is by far the largest ALS clinical trials database ever created, and is in fact one of the largest databases of clinical trial information currently available for any disease.

Data mining of the PRO-ACT is expected to lead to the identification of disease biomarkers, provide insight into the natural history of disease, as well as insights into the design and interpretation of clinical trials, each of which would bring us closer to finding a cure and treatment for ALS. The PRO-ACT database has been recently relaunched with more standardized and research ready data.

Now we finally have the data that may hold the key. The only thing missing is you. The next ALS breakthrough can be yours….

The data is available for research here



Hagit Alon | Scientific Officer

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One Response to “Data of thousands of ALS patients made available for analysis”

  1. John says:

    This is really cool! Besides the reams of data on survival in cancer, do you know of any other massive datasets like this on survival/patient characteristics in disease?