About SARCOIDOMICS
The SARCOIDOMICS (Advancing in High-Risk Sarcoidosis Research Through Multi-Omics: The SARCOIDOMICS Network) Clinical Research Collaboration (CRC) was launched by the European Respiratory Society (ERS) in 2025.
Sarcoidosis is a complex disorder characterised by noncaseating granulomas, primarily affecting the lungs. High-risk manifestations significantly impact morbidity and mortality. SARCOIDOMICS aims to advance sarcoidosis research using multi-omics approaches and machine learning algorithms. The plan is to integrate existing registry structures into a unified, FAIR-compliant European Sarcoidosis Database, develop data-sharing protocols, and create standardised biobanking protocols along with a GDPR-approved image database. This initiative will provide a solid platform for future research projects, enhancing the understanding of sarcoidosis pathobiology and paving the way for personalised therapeutic approaches.
Specific aims
The CRC SARCOIDOMICS aims specifically to:
- Establish a pan-European, standardised data collection and analysis approach, focusing on high-risk phenotypes. This includes creating a REDCap-based clinical database, and an imaging registry using OSIC platform.
- Create a collaborative network of specialised sarcoidosis centres across Europe to facilitate standardised research and improve patient care.
- Enhance patient engagement through collaboration with the ELF Sarcoidosis Patient Advisory Group to supervise network development.
- Develop protocols for sample biobanking and multi-omics research projects.
Operational aspects
To achieve the above-mentioned aims, four work packages are being composed with the following objectives:
- WP1 Data Harmonisation and Registry Integration: Establishing a protocol and governance structure to develop the network’s work packages, creating a standardised data dictionary for sarcoidosis clinical and research data across all participating centres, and revising existing sarcoidosis registries.
- WP2 Collaborative Network: Creation of a network of specialised sarcoidosis centres across Europe for standardised patient care and research collaboration, using the OSIC Knowledge Hub to provide educational videos for clinicians, radiologists, and machine learning experts.
- WP3 Patient Engagement and Dissemination: Improving patient engagement through collaboration with the ELF Sarcoidosis Patient Advisory Group by developing PROMs, multilingual education programmes, ensuring open-access publications, and implementing a high-risk sarcoidosis education programme in at least five languages, reaching over 1,000 European patients.
- WP4 Biobanking and Omics development: Developing and sharing standardised biobanking protocols for sarcoidosis samples with at least eight European countries, and establishing a multi-omics protocol, including radiomics, across at least five European countries.
Stakeholders
The CRC SARCOIDOMICS is composed of the CRC Chairs, experts in clinical research, Early Career Members, and patient representatives.
Contact
If you are interested in more information on the CRC SARCOIDOMICS or would like to join the network, please contact scientific@ersnet.org.