Collaboration between FIN, Bingli and Takeda Belgium on Fabry AI (Artificial Intelligence) Screening Project

Bingli (Belgian digital health company, www.bingli.health) and Takeda Belgium NV (Belgian affiliate of a global biopharmaceutical company, https://www.takeda.com/en-be) are working together to create a smart digital tool that helps doctors to speed up the diagnosis of Fabry disease, helping patients to receive treatment earlier. Using Bingli’s advanced artificial intelligence, the goal is to improve the identification of people with Fabry disease based on the symptoms that they report. This can reduce the time to diagnosis and result in earlier treatment and symptom resolution of this serious medical condition. The Bingli platform prepares the patient for their doctor or hospital visit by asking smart questions via an “intelligent” chat bot. A good and thorough understanding of how the complaints and symptoms are reported by people with Fabry in the real world is therefore extremely important maximize success for a possible diagnosis of Fabry disease using this AI tool.

That’s why Bingli and Takeda Belgium are teaming up with FIN to get input directly from people with Fabry, through an anonymous questionnaire (available in several languages: Arabic, Chinese, Dutch, English, French, German, Italian, Polish, Portuguese, Romanian, Spanish, Turkish).  There will be call for people willing to participate in early 2024. If this piques your interest, be sure to watch out for the invitation in the upcoming months!

Objectives:

  • Understand what symptoms are experienced by people with Fabry disease, explained in their own words. This makes sure our smart tools really understand what it is like to have Fabry disease in real life, not just from medical textbooks.
  • Ensure that our screening tool accurately captures the answers from people with Fabry disease and is easy for them to use and understand.

Methods:

  • Professor David Cassiman (University of Leuven, Leuven University Hospitals, Dept. of Gastroenterology-Hepatology, Adult Metabolic Center), a renowned specialist in metabolic diseases, is the independent scientific advisor for this project.
  • Group 1 (at least 90 people with Fabry): a completely anonymous questionnaire will ask about the presenting symptoms at the time of diagnosis.
  • Group 2 (at least 10 people with Fabry): a smaller group will try out the Bingli tool to describe their symptoms as they were at time of diagnosis, simulating the use of the Bingli platform to prepare for a doctor visit.
  • Links to the survey will be sent out by FIN to national Fabry organizations for further circulation to interested participants.
  • Bingli will only collect anonymous survey data following strict European privacy rules (GDPR). The combined results will be shared with FIN, possibly for a presentation at the FIN Fabry Expert meeting (if ready).
  • Takeda Belgium is giving advice and supports financially, but will never see any patient level data.