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 expects 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 PERSIMUNE Basic and Translational Research Colloquia and Research Meetings. Email us at firstname.lastname@example.org to make sure you are on our mailing list and get all relevant information as well as the PERSIMUNE newsletter. We also recommend following PERSIMUNE on Twitter and/or Facebook. Finally, if your department is not already part of the formal PERSIMUNE collaboration for collection of data from prospective patients, please email us 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. The DWH is updated daily. Available data in the DWH can be searched here or you can request a feasibility analysis as described below.
How to apply to utilize the data
Our application procedure ensures the easiest possible access to data while keeping in mind that all regulations and data protection requirements must be adhered to.
Below is an overview of the procedure:
1. Feasibility analysis (form)
2. Project proposal (form)
3. Data request (form)
4. Data delivery
5. Return of data
All requests and proposals are submitted to email@example.com. For projects that involve the use of specimens from the PERSIMUNE biobank, a biobank request must be submitted.
An optional feasibility analysis evaluates if data of interest is available in the DWH. Please fill out the Feasibility request form and send to us for assessment. If needed, our data managers will then book a meeting with you to get a better idea of the data and patient cohort of interest. The outcome will be an overview of the number of patients with specific conditions and specified data that are found in the DWH.
Once the researcher has confirmed that the data of interest is available in the PM DWH, the next step is to submit a project proposal. This must be completed using the PM Project Proposal Form, which is sent to firstname.lastname@example.org. Please submit approvals from concerned departments as well as any relevant regulatory approvals together with the proposal form.
Proposals are reviewed internally at PERSIMUNE, and you can expect an answer in 2-3 weeks. However, projects requesting biological material from the biobank are reviewed by the Scientific Advisory Committee (SAC) and approved by the PERSIMUNE Executive Committee (ExCom) and therefore require more time. It is also possible to request a SAC review for projects not requesting biological materials.
Please observe that proposals must comply with general rules of transparency as defined in the PERSIMUNE principles.
Once your project proposal has been approved, you will be asked to complete a Data request form. Besides defining the patient group and all the data elements you request, the form has to indicate journal numbers of any relevant regulatory approvals (National and Regional ethics committees, Danish Data Protection Agency, Danish patient safety authority, Danish Medicines Agency).
Data will be delivered in one of three ways:
1. as a SAS dataset with pseudonymised identifiers, or
2. as a CSV file with pseudonymized identifiers (either stored on the L:/ drive or emailed in an encrypted zip file), or
3. as a limited access to the PERSIMUNE data warehouse (pseudonymised identifiers).
If you manage SAS-datasets for research yourself, it is your responsibility to safely store data in accordance with the data protection approval. Naturally you are not allowed to share data with researchers not in your project group (as given in the project proposal).
Return of data
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 by identifying standardization and validation issues when using the data, and then feeding this information back to PERSIMUNE.
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.