Question 1

Who can participate?

Accepted Answer

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.

Question 2

Initial setup and secure access

Accepted Answer

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.

Question 3

Including patients in the Health Data Warehouse

Accepted Answer

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.

Question 4

Participating in a specific research project

Accepted Answer

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.

Question 5

Support provided by JIR

Accepted Answer

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.

Question 6

Security and responsible access management

Accepted Answer

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.

Question 7

Do we need to notify our local ethics committee or legal department?

Accepted Answer

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.

Question 8

Do we need to sign any new agreements to continue participating in the JIR?

Accepted Answer

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.

Question 9

Are new patient consent forms required?

Accepted Answer

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.

Question 10

How can I explain the JIR legal framework to my patients?

Accepted Answer

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.

Question 11

Where can I view the list of ongoing JIR projects?

Accepted Answer

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

Question 12

How can I include my patients in existing JIR projects?

Accepted Answer

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)

Question 13

How can I propose a new research project within the JIR?

Accepted Answer

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).

Question 14

Who is the JIR Data Protection Officer (DPO)?

Accepted Answer

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)

Question 15

How does the JIR legal framework align with local or institutional data protection requirements

Accepted Answer

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.

Question 16

What happens if a center stops participating or if team members change?

Accepted Answer

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.

Participate in a JIR Research Project

ENTER DATA ONCE, USE IT ACROSS PROJECTS

REUSE EXISTING DATA

easily participate to multicenter projects

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