Health and care research today is going through a profound transformation. Thanks to evolving knowledge and the multiplication of health data and data exploitation tools, healthcare professionals and academia are turning into more precise research, that is, a more patient-centred research approach.
The European project “ImmUniverse” has been kicked-off recently to concentrate on understanding what factors impact the progression of eczema and non-response to treatment. EFA is part of the project, bringing the genuine European atopic eczema patient perspective.
Improving diagnostic and therapeutic options for eczema patients
During the next five years, the ImmUniverse project aims at improving diagnostic and therapeutic options for patients living with immune-mediated inflammatory diseases, including atopic dermatitis (atopic eczema) and ulcerative colitis.
With 26 partners from ten European countries, ImmUniverse will investigate how biological processes cause the disease at a molecular level.
“We will specifically compare signatures from the same individual over time, capturing the full range of disease activity. We expect this approach to provide us with valuable insights into the interaction between the factors affecting disease progression and therapy response.”
Prof Silvio Danese, Scientific Coordinator of the project
Researchers are working to identify disease-specific biomarkers and mechanistic principles that could inform about the level of severity and the future progression of these diseases. Better diagnostic procedures and adherence to treatment will eventually allow to improve disease management and patients’ well-being.
Atopic eczema patients, at the core of ImmUniverse
EFA is thrilled about this project and bringing in the perspective of atopic eczema, together with our sister organisation EFCCA, who represents people with ulverative colitis. Especially since we know that atopic eczema patients need help with the utmost urgency. Not only our Patient Reported Outcomes survey on severe atopic eczema expresses a latent need for treatment improvements (only 15% of the patients are highly satisfied with their current treatment), but also better support to actually access care.
In this task of closing the gap between research and patient realities, we will be with the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA). Together we will ensure efficient dialogue and a continuous focus on patients’ needs throughout the project.
In practice, we will establish and coordinate a Patient Input Platform, composed by patients with atopic dermatitis and ulcerative colitis, ensuring a patient-centric approach across the research activities. The patient experts will be advising on clinical research procedures, supporting in the interpretation of research outcomes and assisting in disseminating them.
The ImmUniverse project is funded by the Innovative Medicines Initiative (IMI 2), the world’s biggest public-private partnership within the life sciences. More information on the ImmUniverse project can be found here.