In 2021, our founder Johan Lauritsen experienced the difficulties and disappointments associated with finding a relevant clinical trial. Johan is diagnosed with 5q SMA 2, a chronic and rare neurodegenerative disorder.
At the time being, there was fortunately a lot of ongoing research on this disease, meaning a lot of ongoing clinical trials.
Even though he managed to find a trial, based on back-to-back communications with physicians and reading inclusion criteria such as “Backup gene copy number” “HFMSE score” etc. – he was denied access to a US trial due to the application process taking longer than the recruitment period (>3 months).
At the time, Johan was a medical student and former researcher. He then combined his bright mind and medical knowledge to draw the very first draft of PROBE. He then pitched the idea to the “Copenhagen Health Innovation”, and after winning the competition, things started to rocket.