An interview with PhD researcher Ilse Willemse on the SPAX app for home monitoring in ARSACS and SPG-7

 I completed a master’s degree in technical medicine, specialising in medical sensing and stimulation. During my education I learned how to convert the state of the human body into signals and how to implement new technology in healthcare. I have been working for three years at the center for rare and genetic movement disorders that is part of the Neurology department of the Radboud University Medical Center in Nijmegen, the Netherlands. My focus is the PROSPAX project, so I set up the visits related to this project and collect all the data. This includes neurological tests, MRIs, collecting blood samples and sensor data and instructing participants how to use our new developed research app (the SPAX app) at home. From the introduction of the PROSPAX consortium, I have been in close contact with a mobile health company in Italy called mHealth Technologies in developing the SPAX app. The app is a collaboration between partners of the PROSPAX consortium. We started with lab-based research, then a pilot study, and now we are collecting data over a period of eight weeks, from sites in the Netherlands, Germany, and Italy.  


PROSPAX infographic on their natural history study of individuals with ARSACS and SPG-7 in Europe

The PROSPAX (PROgression chart of SPAstic ataXias) project is a collaborative effort between neurologists across several sites throughout Europe and Canada. The aim is to better understand how spastic ataxias progress over time to prepare well-designed treatment trials for these conditions.  This is called 'trial-readiness'. 


ARSACS Symposium 2023

The 7th International Symposium on Autosomal Spastic Recessive Ataxia of Charlevoix-Saguenay (ARSACS) was held on 19th-20th October, welcoming 200 people online and in-person, from researchers to clinicians, neurologists, physiotherapists, medical students, patients and their families. The event was an opportunity to hear about the latest advancements in ARSACS research and build upon knowledge to lead towards treatments. Click here to read the highlights. 


PROSPAX Annual Meeting, Istanbul, June 2023

On 22nd and 23rd June 2023, the PROSPAX consortia held their annual meeting at the Rahmi M. Koç Museum in Istanbul, Turkey. The PROSPAX project aims to study the progression of Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay (ARSACS) and Spastic Paraplegia 7 (SPG7) over time; from the molecular to the clinical level, including brain imaging, markers of progression and animal models. The meeting was attended by a variety of people across the PROSPAX network, including researchers, clinicians, people with ataxia and the patient advocacy organisation Euro-ataxia.
Read here some of the highlights relevant to the PROSPAX project.


Highlights from the ICAR and 
AGI Conference

Between November 1st – 4th 2022, Ataxia UK, the National Ataxia Foundation (NAF), and the Friedreich’s Ataxia Research Alliance (FARA) co-hosted the International Congress for Ataxia Research (ICAR) in Dallas, Texas, USA.  The Ataxia Global Initiative (AGI) Conference was held immediately after ICAR 2022, On November 4th – 5th.

Read here some of the highlights relevant to the PROSPAX project.



Annual PROSPAX Meeting, Berlin 2022

On 6-8th of July 2022, the PROSPAX consortia held a joint annual meeting in Berlin, Germany. 


Welcome to the PROSPAX research blog! Here we will be adding all the latest news on the PROSPAX project.