15 September 2015

TRICALS database: Patients’ data are truly helping for better ALS research!

Since the start of TRICALS in the summer of 2014, over 450 patients with ALS, PLS or PMA have registered themselves in the TRICALS database. With so many patients, TRICALS can look back at a successful first year. Thank you for registering with TRICALS!

We believe that uniting patients, researchers and pharmaceutical companies will help us to find a cure for ALS. An important strength of TRICALS is the data that patients provide us with by completing their medical profile and updating their ALS score questionnaire (ALSFRS-R) every three months. This data allows us to keep track of the disease progress over time and it enables us to select patients with the same ‘speed’ of ALS. This is of great importance when an effect of a new medicine has to be evaluated. It enables us to see if a new medicine has an effect by comparing the ‘speed’ before and after treatment. This way we can detect an effect during a clinical trial faster and this shortens the time period to develop new medicines for ALS. This is how the TRICALS database can speed up the development of new medicines for ALS.

However, it is very important for us that patients fill in the ALSFRS questionnaire once every three months. To all patients: You are truly helping to improve ALS research by completing the ALSFRS questionnaire. Thank you!

Ruben van Eijk, one of the researchers of TRICALS, has created some figures to show you how your data can help us. Please have a read through his article in which he guides you through the figures.

To further improve the TRICALS database, in the coming weeks some patients will be asked to fill in another questionnaire, similar to the ALSFRS. These patients will also be called by the physician or research-nurse to discuss the questionnaire. In this way we want to check that data reported online by patients is as reliable as data reported by the physician.

Register with TRICALS

We believe that uniting patients, researchers and pharmaceutical companies will help us to find a cure for ALS. Therefore, all patients are welcome to register at www.tricals.org and share their data with us. Your data truly is a valuable resource for better ALS research. Meanwhile, we are extending our collaboration with international partners to extent the power and possibilities of TRICALS.