Participation in a JIR research project is open to clinical centers caring for patients with inflammatory or autoinflammatory diseases that wish to contribute to an existing research project. JIR projects rely exclusively on existing clinical data. No additional patient visits or specific interventions are required.

Before participating in any project, a standardized framework is established between the center and JIR: • Signature of the framework agreement between the institution and JIR • Secure access to the JIR platform using strong authentication (including a YubiKey provided by JIR) • Training and support for using the JIR data platform • Collection of patient consent in accordance with the JIR framework Access rights are personal, named, and proportionate to the actual needs of the center. This setup is completed once and allows participation in all JIR projects.

Centers may include patients in the JIR Health Data Warehouse even in the absence of an ongoing research project, provided that patient consent has been obtained. Patients are included using a minimal dataset, including at least: • the diagnosis • treatments used to manage the disease Additional data entry is encouraged when resources allow. This approach helps anticipate future projects and significantly reduces workload when new studies are launched. Every data point entered today contributes to the research projects of tomorrow.

Once the initial framework is in place, centers may participate in one or more JIR research projects. Each project: • has clearly defined scientific objectives • is validated by the Scientific Data Access Committee (SDAC) • is accessible on the JIR platform under the “Research Projects” section Centers with potentially eligible patients are contacted and invited to complete project-specific data using existing clinical records. The JIR team supports centers throughout the process.

JIR actively supports participating centers through: • Contractual and regulatory guidance • Initial training and continuous platform support • Assistance with identifying relevant data • Methodological and organizational support • Scientific coordination with project leaders When planned within the project framework, dedicated human support may also be provided.

Access to the JIR platform is secured using authentication tools provided by JIR. Access is personal, named, and intended for long-term use within the center. JIR ensures responsible and proportionate access management aligned with the actual needs of participating teams.

No notification to local ethics committees is required. During the signing of the framework agreement, the institution’s legal department will be contacted directly by the JIR team. If any internal institutional procedures are necessary, your legal department will coordinate them as part of this process.

A JIR framework agreement must be signed by all institutions participating in the JIR. For centers that joined before 2023, the JIR team will gradually contact each institution to organize the signature of this agreement. Patient inclusion can continue as usual while waiting for this update. For new centers, the framework agreement must be signed before patient inclusion can begin.

Existing patient consent forms remain valid until the framework agreement is signed. Once the agreement has been signed, the new consent forms provided by the JIR must be used for all newly enrolled patients.

An explanatory flyer for patients is available on request. Please contact the JIR team at info@jircohorte.ch (mailto:info@jircohorte.ch)to receive it.

All currently active projects are listed on the Transparency Portal: 👉 https://www.jircohorte.org/ongoingprojects(https://www.jircohorte.org/ongoingprojects)

All projects are visible on the JIR platform under the “Research Projects” tab in the blue menu at the top of the page. From this menu, you can immediately see whether your patients meet the inclusion criteria for any project. A step-by-step tutorial explaining how to include your patients in a specific project is available here: 👉 https://www.jiracademy.org/courses/jircohort-participate-projects(https://www.jiracademy.org/courses/jircohort-participate-projects)

To submit a new project, please contact the JIR team at info@jircohorte.ch,(mailto:info@jircohorte.ch) providing: • The title of your project, and • A short description of the objectives (maximum 15 lines).

The JIR’s Data Protection Officer is Ms. Claire Lauria, attorney-at-law at Life Avocats. She can be reached at dpo@jircohorte.ch.(mailto:dpo@jircohorte.ch)

The JIR legal framework fully complies with the Swiss Federal Data Protection Act (nLPD) and the European GDPR. Compliance with any additional institutional or national regulations should be verified on a case-by-case basis with the JIR DPO.

If a center stops participating in the JIR, its patients will no longer be included in future projects. In case of personnel changes, please contact info@jircohorte.ch (mailto:info@jircohorte.ch)to deactivate access for departing team members and grant access to new staff.