3 July 2016

Patient data helps to design more efficient ALS trials

Since the start of TRICALS in the summer of 2014, over 500 patients with ALS, PMA or PLS (MND) have registered themselves in the TRICALS database. By filling in the questionnaire on disease progression (ALS-FRS-R) within TRICALS patients are truly helping us to design more efficient ALS trials.

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.

Patient data give the opportunity to make ALS trials more efficient. Many patients fill in the ALSFRS questionnaire once every three months and this data is an invaluable recourse for better research.

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.

For the article in Dutch, click here.

Register with TRICALS

We believe that uniting patients, researchers and pharmaceutical companies will help us to find a cure for ALS. Currently, patients from France, Italy, Ireland, Switserland, Belgium and the Netherlands can register, while we are working to increase access for other patients also. Patients are welcome to register with TRICALS and share their data with us.