Cutting-edge Big Data initiative seeks to provide crucial support to people affected by Amyotrophic Lateral Sclerosis and Multiple Sclerosis

Mamede de Carvalho, a renowned neurologist and the head of the Amyotrophic Lateral Sclerosis (ALS) Clinic at Centro Hospitalar Universitário Lisboa Norte (CHULN), situated at the prestigious Hospital de Santa Maria, recently unveiled the exciting BRAINTEASER project during an exclusive interview with SaúdeOnline.

Here are some captivating insights from Professor de Carvalho’s presentation.

What is the current status of the BRAINTEASER project?

BRAINTEASER commenced in January 2021 and is slated for completion at the close of 2024. At present, the project is actively enrolling patients and gathering their data, all while continually enhancing the technical aspects of analysis tools and algorithms. It’s worth noting that some project data is already available to the worldwide scientific community.

What is the added value for patients?

The added value is (1) closer and more continuous monitoring of patients and their caregivers, avoiding the necessary periodicity of hospital visits; (2) faster perception of more complex clinical events and situations that may require more timely intervention by the medical team; (3) greater opportunities for inclusion in clinical trials of new drugs, with a greater likelihood of finding a positive effect; (4) and satisfaction in participating in a scientific study that will potentially condition the advantages listed above.

What significant stride can this project represent for clinicians?

It paves the way for the creation of artificial intelligence algorithms, underpinned by extensive data, which can identify previously undiscovered clinical insights. This breakthrough holds the promise of delivering more efficient and individualized treatment and care to each patient.

One of the factors BRAINTEASER investigates is the correlation between the two diseases and air pollution. Can it be stated that this research, by exploiting cutting-edge technologies, will broaden the scope of the investigation, making it more complete?

Environmental factors are regarded as pertinent to the onset and advancement of both diseases under examination. Therefore, conducting a systematic and quantitative investigation into these factors could yield highly significant insights.

Regarding big data and AI, some fears arise, particularly about security. Are there any risks associated with this project?

The project complies with European and national data protection regulations. A computer system assigns random codes to patients, effectively replacing identifiable details such as names, addresses, full zip codes and dates of birth. The only individual who knows the patient’s identity, in this case, myself in Portugal, retains this information. The data is amalgamated with a large dataset of other patient information and subjected to analysis through mathematical algorithms using computer techniques. It’s like finding the specific hen that contributed an egg to our omelette, a complex but safe process.


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