Over the last six months Decodeon has actively worked on a unique solution that helps to enable faster development of rare disease treatments. It is our ambition to help people with a rare disease to understand their condition better by offering new disease insights and enabling them to be part of medical research. Medical research and hence drug development is currently slowed down by the challenges of finding matching study participants. This issue is addressed by bridging the gap between patients and research. The platform allows patients to connect to local clinical trials for their disease and simultaneously facilitates the sharing of knowledge and experiences to advance patients understanding of their condition. Hence, connecting patients and research, ultimately supports the availability of rare disease treatments.
By offering this solution, Decodeon is able to address two problems:
Firstly, currently 95% of all rare diseases have no approved drug treatment. With our solution, drug development can be speed up, hence lowering the respective costs and making it more attractive to initiate research on rare diseases. Secondly, we identified that people with a rare disease feel there is too little disease information available including the real-life consequences of having a rare disease. This lack of information is a key factor in experiencing anxiety caused by uncertainty, as many people simply do not know what to expect from the future. By building platforms that facilitate the exchange of experiences among patients generating new disease insights that help to tackle this uncertainty.
There are approximately 7,000 rare diseases, with new ones being discovered every day, affecting 350 million to 600 million people worldwide. However, due to several factors, such as patients being unaware of research opportunities and potential participants being located far away from each other, researchers face challenges to develop effective treatments for rare diseases. Decodeon solves this problem by fostering the exchange of information and knowledge and helping people to find research studies. The result is being one step closer to speeding up the development of rare disease medicine.
The overall objectives were the fostering of the connection of patients and research, to define the commercial and marketing strategy and to validate and refine the business model.
All objectives are achieved through the work performed in this feasibility study.
