Data requests

C-support collects and manages data from various studies. Below you will find an overview of the various studies from which data can currently be requested:

• Multi-year Long COVID study
• Multi-year QVS database research
• Other data on request

Our data can be requested in various forms. In addition to the delivery of data, you will receive an explanation of the data used and advice on the interpretation. The various forms to request data are:

Data file(s) at record level

Record-level data files are datasets in which each row represents a separate individual or observation. These files contain detailed information per record, such as characteristics and specific measurements. This makes them suitable for in-depth analyses and discovering patterns at the level of individual units. You can perform your own analyses with these data files.

Analyses: summary table(s) and/or graph(s)

Depending on your wishes, we can create customized summary table(s) and/or graph(s) for you. These are data aggregated at group level, for example by grouping by categories, such as age groups or gender. A table does not contain individual data, but averages, totals, or other summaries to analyze patterns and trends. For a graph, you can think of a bar chart of the five EQ-5D-5L domains for different age groups.

Analyses: statistical test(s)

Statistical tests can also be performed by us. For example, think of tests to statistically compare two or more different groups, such as age groups, or multivariate analyses. Depending on your wishes, we can create an analysis plan together and perform analyses.

There are a number of steps involved in processing your data request, these are:

1. Complete the data request form
   You submit a written request to C-support by 'data request form' to be completed and sent to research@c-support.nu.

2. Designate contact person
   For each data request, a contact person is appointed by our organization. This person will contact you within two weeks after you have submitted your data request.

3. Application assessment by internal committee
   If your data request is specific and clear enough, it will be submitted to our internal review committee. This committee will assess your request on the criteria of scientific quality, relevance, duplication, and feasibility. It will also be assessed whether the research question can be answered with the requested data. Only data that are necessary for answering the formulated research questions will be made available. C-support will only make data available for which, if applicable, the correct informed consent has been obtained in accordance with the applicable laws and regulations. This consent explicitly includes the transfer of the data for the intended purpose. If applicable, privacy-sensitive information will be assessed; this will only be provided if essential for the research question to be answered and approved by the review committee.

4. Drafting an agreement
   An agreement is drawn up for each data request. This agreement contains the agreements made, the conditions and the costs.

5. Lead time
   We aim for a lead time for a data request of maximum six weeks. The start of the lead time starts from the moment the data request has been assessed and approved and the data delivery agreement has been signed by all parties. We advise you to submit your data request at least three months before the desired delivery date and to specify your request as clearly as possible.

Processing your data request and delivering the requested data may involve costs for the execution thereof. Depending on the size and complexity of the requested data and/or analyses, costs may be determined after evaluation of your data request. These will be presented to you by means of a quotation.

Conditions for data requests

We set conditions for the use of our data. In short, these consist of:

• Data can only be requested for (scientific) research.
• A data request must contain a clear and specific research description, including a concrete plan with clearly defined and delimited research questions.
• The requested data must be relevant and necessary for answering the research questions. These data may only be used for the purpose for which they were requested.
• Researchers are only given access to the specific data needed to answer their own research questions.
• With the data obtained from one data request, you can write one publication. If you want to write a second publication, you must submit a new data request. A reduced rate applies to this additional request.
• The content, methods and quality of the research are the sole responsibility of the researcher.
• The results of the research must be published publicly.
• The research must be submitted to C-support before publication. Upon publication, C-support receives a copy. At least one C-support employee is actively involved in the reporting and is a co-author.
• The data must be analyzed in an environment that guarantees scientific integrity.

A complete overview of the conditions can be found via the button below.

2024

• Maastricht UMC: PINCOR study: from multi-year Long COVID research; various aggregated insights such as EQ-5D for different patient groups.
• Zilveren Kruis: from multi-year Long COVID research; aggregated insights into types of care providers.

2023

• Amsterdam UMC, PASC study: from multi-year Long COVID research; aggregated insights regarding ethnicity, inviting participants in ethnicity research.
• Lareb: various aggregated insights into patients with complaints after vaccination.

2022

• Amsterdam UMC: aggregated insights into age groups of children, inviting participants to research children.
• UWV: data collection and exchange for research into the resilience of patients.
• Maastricht University: sharing data for additional research into the impact of Long COVID on specific groups.