Welcome to the PROMOT Website!
- ameliefournier4
- Dec 7, 2024
- 1 min read
We’re excited to launch the official website for Performing a Rare Disease-Oriented Master Observational Trial (PROMOT). This space will be your go-to source for updates, news, and breakthroughs related to the PROMOT project.
What is PROMOT?
PROMOT, supported by the European Joint Programme on Rare Diseases (EJP RD), began on June 1st, 2024, with a mission to revolutionize real-world data collection for four rare neuromuscular diseases (NMDs) – oculopharyngeal muscular dystrophy (OPMD), congenital myopathies, congenital myasthenic syndromes, and myofibrillar myopathies.
This ambitious four-year project is working to develop an innovative precision medicine approach through a digital learning platform known as LEAP FORWARD.
Our goals include:
Identifying biomarkers that indicate disease severity and progression.
Creating a dynamic, digital interface for patients and healthcare professionals to share insights and mobilize knowledge.
Enhancing care and research through better integration of patient data.
A Collaborative Effort
The PROMOT Consortium is a powerhouse of collaboration, uniting 10 partners across 6 countries. This team includes academic institutions, subject matter experts, patient organizations, and leaders in artificial intelligence (AI).
Together, we are building a foundation for:
Expanding the use of real-world patient data.
Amplifying the voices of individuals with rare NMDs in shaping care and research priorities.
Advancing the role of AI and digital tools in rare disease research.
Stay tuned for updates as we work together to improve outcomes and empower patients within the rare disease community.
