The goal of Harmonis@tion is to constitute multidisciplinary network to harmonize clinical care and research on adrenal tumours throughout Europe.
Adrenal tumours affect more than 3% of the population aged > 50 years, and their absolute prevalence is increasing due to population aging. Most of these tumours are benign and hormonally inactive. However, 2-10% of them are at risk of malignancy, and 20-40% present hormone over-secretion, leading to significant morbidity.
Management of adrenal tumours is quite heterogeneous, and this leads to substantial inequality in patient care throughout Europe. In this context, the goal of Harmonis@tion is to constitute a multidisciplinary network to harmonize clinical care and research on adrenal tumours throughout Europe. Our focus will be on COST Inclusiveness Target Countries (ITCs). In addition, this collaborative network will establish a modern framework to develop a new generation of real-time and real-life randomized clinical trials, which will be federated and registry-based. For this purpose, Harmonis@tion will be organized in five Working Groups: 1. Harmonizing clinical practice for adrenal tumours; 2. Harmonizing adrenal tumour research and -omics practice; 3. Harmonizing Information Technology (IT)/Artificial Intelligence (AI) tools towards a standardized registry; 4. Harmonizing the ethical and legal framework required for federated European trials; and 5. Communication, dissemination, and inclusiveness.
The successful execution of Harmonis@tion’s goals is guaranteed by the collaboration of clinicians, researchers, and experts from other relevant fields, including artificial intelligence, data science data protection, legal and ethical issues, and patients’ representatives.
- Develop common diagnostic algorithms and treatment guidelines to homogenize clinical practice, targeting the highest standards, and bringing information/technology to all European countries.
- Establish standard operating procedures for the collection of clinical information on sampling, for quality assessment, and for data analysis, from high throughput platforms.
- Coordinate the development of a biobank devoted to adrenal tumours. Create an artificial intelligence-based digital framework for semi-automated treatment of medical records. This will establish the bases for a new federated registry, which will serve to implement and run next generation clinical trials.
- Prepare nation-specific adaptations of a common European ethical and regulatory framework promoting federal research at the European level.
- Facilitate co-creating input by patient representatives to allow patient-driven priority setting of the research agenda, co-creating input into interventional study designs and the development of patient- reported outcome measures.
- Disseminate knowledge and seed standard operating procedures for translational research, promoting future federated European research.
- Advocate adrenal tumour patients’ feelings and opinions towards the medical, research, industrial, and institutional communities.
- Promote the highest standards of clinical practice for adrenal tumour management, by acting as a stakeholder platform and a trans-national practice community.
- Foster knowledge exchange and develop a joint research agenda on adrenal tumours at the European level.
- Bridge the fields of medical research, information technology, and ethics/regulations, creating a multidisciplinary task force. This will lead to a new generation of clinical trials featuring AI for real-life, real- time, and federal implementation.
- Involve and train early-career clinicians and researchers, especially from ITCs, and make them into the next generation of adrenal experts.
- Train researchers in using new technologies in molecular biology, such as genomic tools, to find and interpret molecular biomarkers.
- Actively promote the inclusion of new researchers and other reference networks.
COST is an EU funding programme that enables researchers to set up their interdisciplinary research networks in Europe and beyond. We provide funds for organising conferences, meetings, training schools, short scientific exchanges or other networking activities in a wide range of scientific topics. By creating open spaces where people and ideas can grow, we unlock the full potential of science.
Harmonis@tion aims to constitute a multidisciplinary network to harmonize clinical care and research on adrenal tumours throughout Europe with a focus on COST Inclusiveness Target Countries. In addition, this collaborative network will establish a modern framework to develop a new generation of real-time and real-life randomized clinical trials, which will be federated and registry-based.