Access to Data & How to Get Involved
Data Warehouse Governance

How to get involved

PERSIMUNE offers its infrastructure in form of data from the Data Warehouse (DWH), and specimens from the biobank for research purposes. We emphasize that this is a collaborative research infrastructure, not just a service for researchers. We hope you will take advantage of the great opportunities and shortcuts to obtain enriched datasets for research that the infrastructure allows, but in return PERSIMUNE expect you to engage in the feedback loop contributing to the cleaning and validation of data in the Data Warehouse. For details on data access, see below.

We also encourage all researchers to participate in the monthly Immunological Colloquiums – or investigator meetings – see calendar for next meetings
Finally, if your department is not already part of the formal PERSIMUNE collaboration for collection of data from prospective patients, please email mail  to receive guidance on how to get involved.


Data Warehouse (DWH)

The DWH contains prospective and historic data derived from patients treated at clinical departments at Rigshospitalet including data from para-clinical departments, laboratories and imaging. An interactive description of data in the DWH will be available; see this illustration of available data.

Application Procedures
Please observe that the below procedures will ensure the easiest possible access to data while keeping in mind that all regulations and data protection requirements must be adhered to.

Data for research, FEASIBILITY ANALYSIS
Access to data for research purposes is based on a research proposal being submitted to PERSIMUNE.
Before submission of a proposal we ask researchers to request a feasibility analysis to evaluate if the sample size and requested data is available in the DWH. This can be done by writing to PERSIMUNE IT at persimuneit.rigshospitalet@regionh.dk. State the purpose of your project, which group of patients, which departments are involved, which variables in which time interval. You may be asked to complete this form to allow us to do an analysis to identify the number of patients with specific conditions and specified data that are found in the DWH. 


Submit proposal
If the feasibility analysis supports moving on with the project, the next step is proposal submission. Link to proposal form

Projects seeking funding from the DNRF grant or requesting biological material from the biobank will be reviewed by the Scientific Advisory Committee (SAC). 

For projects not seeking for DNRF funding or biological materials it is possible to request a Scientific Advisory Committee (SAC) review of the proposal
 

Transparency for all departments

Please observe, that proposals must comply with general rules of transparency as defined in The PERSIMUNE principles


Technical data request

When your project has been reviewed, you will be asked to complete a data request form. Besides defining all the data elements you request, the form has to indicate the project approvals obtained from the Data Protection Agency, Danish Health and Medicines Agency and Ethics Committee where relevant – copies of approvals have to be submitted with the form unless PERSIMUNE already received the approvals.

Data delivery
Data will be delivered in one of two ways:

1) as SAS dataset with pseudonymised identifiers, or 

2) as a pseudonymised dataset stored in the LabKey software portal that ensures that only you and named researchers in your team will have access to the data.

If you manage SAS-datasets for research yourself, it is your responsibility to safely store data in accordance with the data protection approval – we will ask you to sign off on this condition when requesting data. Naturally you are not allowed to share data with researchers not named in your approval.

The collaboration rely on contribution to improving the DWH
Collecting data from the long list of data sources in PERSIMUNE also means that data on the same variable from different sources might have different names, normal values and reference values. An enormous standardization and validation work is ongoing and we rely on all collaborators to contribute to the process – either prospectively by cleaning specific parameters of their interest or retrospectively, when using the data and thereby identifying standardization and validation issues, then feeding this information back to PERSIMUNE.

Return of data
When you receive data, we ask you to acknowledge that you will return all results of data cleaning and or standardization procedure the data might undergo while you use the data and that you will return or destroy all data after completion of your project. Also, we ask you to return all statistical and/or bioinformatics coding produce used during data analysis for PERSIMUNE to be able to re-run analyses should journals or funding agencies ask for such analyses. 

Data for patient management
PERSIMUNE wants to establish access to data at patient level in order for departments to treat, manage and monitor patients – this will be operationalized via a web-interface for clinics to view data of their own choice for their own patients – this web-platform will be implemented as step 2 in the DWH development.