Clinical trials need to leave the clinic
A Curalysis blog post argues that amyotrophic lateral sclerosis (ALS) clinical trials and routine care should reach people who live far from major research centres. It highlights remote monitoring, digital consent, video calls, patient-reported outcomes and data collected at home as possible ways to widen participation. The post also supports collecting richer patient data to identify treatment effects in smaller subgroups.
Why this matters
People with ALS who live regionally, remotely or in lower-resource health systems may have fewer opportunities to access specialist care or clinical trials, according to the post. Wider use of decentralised approaches could make participation less dependent on travel and help researchers capture how ALS changes in daily life. This is an argument for changing research and care systems, not evidence that these approaches improve treatment outcomes.
Limitations and context
This is a first-person opinion and advocacy blog post from Curalysis, not a clinical trial or peer-reviewed research study. It does not present new outcome data showing that decentralised trials or richer data collection improve access, safety, data quality or treatments. Those effects would still need to be demonstrated in well-designed studies and care programmes.