Requesting data

Procedure for requesting data

Requests for data can be submitted by researchers who want to use the PPP data for research questions with regard to Parkinson’s disease or PSP.

Every request should include at least one applicant holding a PhD degree. Do you want to request data from one of our studies? Please use the following steps as a guideline.

Step 1: Preparing your project proposal

To request data, you need to fill in the project proposal template. Before starting to write your proposal, please check the ‘Available data’ page and approved projects. Here you can find data dictionaries that describe the data that are collected during the studies. If you want to include samples in your proposal, please contact the Research Support office to check the availability of the samples.

Before submitting your project proposal, you need to send the proposal to the PPP data management team. They will check the application and will ask for revisions in case of missing information. Furthermore, the Research Support office will also provide a quote indicating the costs of the requested data release. Please find more information on the costs here.

Step 2: Review of the project proposal

After the review of your project proposal, you submit your final application to the Research Support office. An application should at least include a completed project proposal and a short CV (max 1 A4) of the principal investigator. Next to this, applicants are free to include documents that are of added value to the application, e.g. an approved study protocol or grant approval, a non-WMO declaration, or a patient letter. Submission guidelines and deadlines depend on your organization:

Pre-approved organizations

The following organizations have been marked as pre-approved users of the data:

• Partners in the project (Radboudumc, Verily, and UCB)
• All Dutch University Medical Centers

Researchers who are affiliated to one of these organizations can submit their proposals to the Research Support office at any time. Internal review of the proposal will be performed within four weeks after submission of the proposal.

Non pre-approved organizations

All other organizations are marked as non pre-approved organizations. Researchers affiliated to a non pre-approved organization need to get their proposal reviewed by the Research and Data Sharing Review Committee (RDSRC). More information on the RDSRC dates of the meeting and according deadlines can be found here. Proposals that will be reviewed by the RDSRC need to be submitted for an internal check at the Research Support office at least two weeks before the meeting; decisions will be shared within two weeks after the meeting.

Please note that the Research Support office will publish the summaries of all accepted proposals on the PPP website.

Step 3: Signing of agreements and access to data and/or samples

After approval of the application, all researchers (pre-approved and non pre-approved) will sign a Qualified Researcher Agreement (QRA), which includes the terms for accessing and using the data. Please note that this agreement should be signed in addition to other agreements that are already in place, like a collaboration agreement within a consortium, as the QRA contains agreements that are specific and only for the PPP data.

After signing the agreement, the Research Support office will provide the researcher with access to the data repository in which the data is stored, and will send an email with instructions on how to download the data. More information on our data repository can be found here.  

If samples are to be requested, a sample request form needs to be submitted to the Radboudumc biobank by the Research Support office. Radboudumc will prepare the samples for shipping; shipment must be arranged by the receiving party. Costs will be billed to the researcher and prices will depend on the specific requirements such as number of samples and, if applicable, lab costs.