TREAT-NMD are proud to announce the launch of an incredibly exciting and ambitious new project that aims to accelerate research, understanding and treatment for neuromuscular and other rare diseases.
The Patient Lifestyle and Disease Data Interactium (PaLaDIn) aligns with our vision to accelerate the development of effective treatments and to establish best practice diagnosis and care for neuromuscular patients worldwide. Funded by the Innovative Health Initiative (IHI) with contributions from TREAT-NMD, The FSHD Society and UK Research and Innovation, twenty-one million Euros was granted to develop a new state of the art data collection platform. The platform will drive real world data collection from patients with rare neuromuscular diseases from all over the globe.
The platform, known as ‘The Interactium,’ will integrate patient data from a range of sources including Patient Reported Outcome Measures, patient preferences, and data from registries and wearable devices. This project seeks to transform data collection and to accelerate novel therapeutic development. It will enable more effective decision making in healthcare at all levels.
Translational medicine researchers and developers will be able to use improved data sets to develop therapeutic options that best meet the needs and preferences of patient populations. Excellent quality data is especially important in the development of therapies for rare diseases where patient data is scarce.
The project is a collaboration between nine outstanding organisations who have united under a common goal to overcome obstacles affecting the advancement of treatment, diagnosis, and care of neuromuscular patients worldwide. All nine contributors are fully committed to this four-year project and are excited that after months of planning and shaping it is now ready for launch.
David Allison, CEO of TREAT-NMD Services Ltd, recognises just how important this project is to the community and we are honoured to work alongside our fellow contributors to realise PaLaDIn’s aim:
“We at TREAT-NMD provide a global network of experts in neuromuscular diseases. The strength and expertise of our network, and all nine global partners working together to deliver the PaLaDIn project, means that we can collaborate to transform the NMD field.
“The mission of this consortium of partners is to create a data platform that will help to pioneer effective treatments, delivering the best care for those living with NMD and other rare diseases across the world.
“One of the biggest challenges we face in our field is the lack of patient data. PaLaDIn is designed to tackle exactly that challenge, working with patients, healthcare professionals and researchers to collate impactful data that can make a big difference in rare disease diagnosis and treatment.”
We would like to thank the consortium for the work completed so far – here’s to a successful and ground-breaking project!
Parent Project aps (Coordinator), TREAT-NMD Services Ltd (Scientific Coordinator), Newcastle University, Ludwig Maximillian University of Munich, Duchenne UK, University of Amsterdam Medical Center, FSHD Society, Aparito BV and Leiden University Medical Center.