ImmUniverse: precise diagnosis for atopic eczema
ImmUniverse or “Better control and treatment of immune-mediated diseases by exploring the universe of microenvironment-imposed tissue signatures and their correlates in liquid biopsies” is a project seeking to improve diagnostic and therapeutic options for patients living with immune-mediated inflammatory diseases, including atopic eczema.
EFA coordinates a Patient Input Platform (PIP) together with the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA). The PIP is composed of 15 patients with atopic eczema and ulcerative colitis from 11 European countries, including members from EFA’s Atopic Eczema Working Group.
In 2023, EFA continued to work to ensure the patient centricity of the research, setting the basis for a stronger participation of the PIP throughout the project and a deeper involvement of patients in the research. In May 2023, two EFA representatives joined the in-person Consortium Annual Meeting in Milan (Italy). During the meeting, EFA led a session on the challenges of patient engagement. Due to the pandemic, the project consortium had missed opportunities for meaningful patient engagement at the beginning of the project. The meeting was used to brainstorm and define future opportunities for improvement and develop a new PIP involvement action plan (e.g., co-creation of lay summaries and clips, exchange with scientists of meaningful endpoints for patients, etc.).
ImmUniverse consortium meeting in Milan.
3TR: precision medicine for asthma and COPD
“Identification of the Molecular Mechanisms of non-response to Treatments, Relapses and Remission in Autoimmune, Inflammatory, Allergic Conditions” or 3TR, is the largest immunology project of the Innovative Medicines Initiative (IMI2). It aims at improving our knowledge of how patients with allergic and inflammatory diseases, such as asthma and chronic obstructive pulmonary disease (COPD), respond to treatments and at ways to enhance personalised therapies.
EFA brings the patients’ perspective to 3TR through the coordination of an adult and paediatric 3TR Respiratory Patient Working Group (PWG). The group is composed of 65 asthma and COPD patients, providing their advice and revising clinical protocols. Within this group, there are patients stemming from various EFA Youth Parliament as well as several members including FederAsma e Allergie Onlus, Longfonds, Respiriamo Insieme, FENAER, Asthma Society of Ireland, and COPD Support Ireland.
In 2023, the work of the PWG coordinated by EFA, together with the European Lung Foundation, intensified as the project generates more evidence.
- Within the respiratory work package, the Air Bio Cohort or ‘ABC’ study This study looks at how people respond to biologic treatments for severe asthma. The Respiratory PWG was involved in improving the design of the study and the information addressed to the patients in four different sites which are already open. The 3TR consortium developed a ‘Core Outcome Measures sets for paediatric and adult Severe Asthma' (COMSA). Core outcome measures (COM) are a set of tools that should be used in all studies about a specific topic. The sets were developed with the input of the severe asthma patients and patients’ representatives in the PWG, as well as with doctors and health professionals, researchers, and staff from pharmaceutical companies. The COMSA will serve as a basis for future clinical trials and allow researchers to compare results between studies more easily. Until now, researchers have not used a standard set of Core outcome measure to understand whether biological therapies for asthma work. This working group has filled this gap with the COMSA, which will enable better data creation and assessment of biologics in childhood and adult asthma clinical trials, providing a significative advancement towards a personalised approach in the treatment of asthma.
- Preparation for the first COPD study started, TR-ICS COPD study, aiming at investigating the effect of inhaled corticosteroids (ICS) on the airways and blood of COPD patients who are treated with bronchodilators. Members of the 3TR Respiratory Patient Working Group (PWG) were consulted to provide the first round of feedback on the protocol.
TOLIFE: Artificial Intelligence for COPD
TOLIFE is an EU Horizon research project looking at clinically validating an artificial intelligence (AI) solution to process daily life patient data captured by unobtrusive sensors to enable optimised personalised treatment, assessment of health outcomes and improved quality of life in COPD.
EFA is responsible for the establishment and management of the Patient Advisory Group (PAG) composed of 12 members (10 of them are from EFA Members). PAG patient experts provide continuous feedback and ensure the inclusion of the patients’ perspective across the project. The mission of the TOLIFE PAG is to ensure the COPD management models proposed in the project address patients’ needs in a comprehensive way.
In 2023, TOLIFE PAG took a consultative role, providing essential input on patient priorities, data collection, study design, and dissemination across different work programmes of the project. We held six consultation meetings including four meetings on the Clinical Study A and smart devices (June-Nov 2023). PAG members provided feedback and the patient perspective on the clinical protocol of the study, on the devices that will be used in the study (such as smartwatch, smart shoes, digital spirometer), on the patient information materials, and on the patients-dedicated app interface. Three PAG members attended the Annual General Meeting in Barcelona (Spain) as representatives of the group (September 2023). In this occasion, they met in person the researchers, tested the different devices and sensors, and provided feedback about them.
EFA-led PAG members could test smart devices during the TOLIFE General Annual Meeting in Barcelona (Spain), in September.