Apply for data access
The SCAPIS portal opened on March 17, 2021.
Apply hereThe first public release of data was on March 17, 2021. All researchers based in Sweden, or international researchers in collaboration with a researcher based in Sweden, are welcome to apply for data. Applications are to be submitted electronically on the SCAPIS portal (accessed via this website).
The SCAPIS recruitment phase, when data, bioimages and biological samples were collected from 30 154 individuals, was completed in the end of 2018. SCAPIS aims to gradually release these data resources for use in research in a form that is comprehensive, of high quality and easy to use.
The following are required to access SCAPIS data:
Connection to a research institution in Sweden
To apply for data, you have to be connected to a research institution in Sweden such as a university or a regional health care authority.
The responsible researcher must have a PhD
The researcher responsible for the project must have a PhD, but the application itself can be registered and filled in by someone who does not have a PhD. In the case of an approved application, however, it is always the responsible researcher who ultimately receives and is responsible for data provided by SCAPIS.
Approval from the Swedish Ethical Review Board
An approval from the Swedish Ethical Review Board (Etikprövningsmyndigheten) for the research project is obligatory before an application for data from SCAPIS. Obtaining the ethics approval is the responsibility of the individual researcher or research group. Individual ethics approvals are also necessary for researchers with their “own” local data generated within the SCAPIS project (“local sub-studies”). You can find the templates on Etikprövningsmyndigheten’s website.
Specific wordings for applications
There are specific wordings that are recommended for inclusion in ethical applications concerning SCAPIS data. We strongly recommend reviewing these.
When applying for ethical approval for a study on national SCAPIS data, the common core template for informed consent can be used.
For local substudies, locally adapted versions of informed consent to the specific center - Göteborg, Malmö, Linköping, Stockholm, Umeå, Uppsala - may be more appropriate.
Finally here is a link to informed consent for the pilot study.
With regard to ethical approval, the SCAPIS office will review the following:
that the approval clearly refers to the project applying for data from SCAPIS
that the population described in the ethics application matches the population in the application to SCAPIS
that the project’s Principal Investigator is involved in the ethics application
that the organization responsible for the project (”forskningshuvudman”) which applies for data from SCAPIS is specified in the ethical application
that requested data is relevant to the project based on the description in the ethics application and the description in the project application
It must be stated in the ethical application that data from SCAPIS will be used
Guarantee no overlap with SCAPIS core publications
Within SCAPIS, there are specific scientific topics that are of strategic importance and provide significant value to the SCAPIS cohort. These topics are defined and prioritized as core publications, and they will be coordinated by the SCAPIS team. Applications with similar research questions will not be granted data access during a limited time period. A list of the core publications is available here.
Data access board
When an application for data access requires a more thorough discussion and a decision from scientific experts the application is referred to SCAPIS Data access board. The scientific members of the board are currently the following members of the SCAPIS National Steering Committee:
Professor Göran Bergström, Director, University of Gothenburg (PI Gothenburg)
Professor Carl Johan Östgren, vice Director, Linköping University (PI Linköping)
Professor Gunnar Engström, Lund University (PI Malmö/Lund)
Co-authorship
The SCAPIS study is a Swedish multicentre collaboration between six host universities and university hospitals, and considerable time and resources have been invested to enable the completion of the study including more than 30,000 participants. In order to appreciate this collaboration, all scientific publications using the full SCAPIS cohort have hitherto included authors from all six host universities. It is important to continue to acknowledge this unique national collaboration within SCAPIS as well as endorsing these universities in future studies, also after the launch of the SCAPIS database as an open research resource. Accordingly, all forthcoming scientific publications based on the SCAPIS national database should acknowledge this national collaboration and include authors from all six participating universities. The applicant is obliged to invite one co-author from each host university to take part in the study. The invited host university co-author has the right to renounce co-authorship and contact the local PI to suggest a replacement. The Vancouver guidelines for authorship must be followed.
Return of new variables to SCAPIS
Researchers will be asked to return any new variables created from SCAPIS data or other SCAPIS resources to the SCAPIS database in a predefined format.
How to apply
Written instructions on how to apply
Access fee
An administrative fee will be charged before data sharing. The fee to access data for research from SCAPIS helps cover the project's running costs. Access fees will be reviewed regularly. The costs are:
5 000 SEK + VAT per application for initiation of the application process.
An additional cost of 30 000 SEK + VAT for access to data including up to 250 variables. For access to data of more than 250 variables an extra cost of 100 SEK + VAT per variable applied for will be added.
Please note that the initiation cost (5 000 SEK + VAT) is mandatory for all applications even if the application is not approved.
The invoice will be sent from the SCAPIS Office after handling of the application and the case is closed.
Access to register data held by The National Board of Health and Welfare (Socialstyrelsen) generates an additional cost of 10 000 SEK + VAT per selected register (four different register at present).
Conditions for using SCAPIS data
SCAPIS is a collaborative project and a result of the hard work of many people and the generous contributions of the study participants. To make best possible use of the data, the following conditions apply.
Populations and data that is available
The SCAPIS study included a total of 30,154 individuals at 6 six different sites (Göteborg 6,265 participants, Linköping 5,057, Malmö 6,251, Stockholm 5,039, Umeå 2,506, Uppsala 5,036). Of he 30,154 individuals, 14,646 were men and 15,508 women. In addition, a pilot study was conducted in Gothenburg the year before the main study started comprising 1,111 individuals. When applying, either the entire SCAPIS cohort can be selected or a selection based on one or more specific site / s. The pilot cohort can also be selected as a selection.
Data presently available is presented under the section "Data open for access". In the SCAPIS portal you can see the complete selection of all variables that are currently available. Available data comes mainly from the SCAPIS study's core surveys, ie surveys conducted on all sites. However, there is also some data from local sub-studies within SCAPIS that have been performed on some or all of the cohort participants at a particular site. Data from local sub-studies will be released gradually over time.
Please note that data applied for must not be used for linkage to other registers or for prospective follow up analyses.
From application to data delivery
All information you need after having submitted your application can be found here.
More than 1000 data points (variables) are open for access, covering areas such as:
Body measurements
General laboratory data
Blood pressure
Lung function measured by spirometry
Accelometric data
Questionnaire data relating to dimensions central to the research aims
Data from structured radiologist judgement of all images
Variables from CT Lung examinations (CT LUNG)
Metabolomic and proteomic data (n=5000 from main study and n=1100 from pilot)
Data from four registers held by The National Board of Health and Welfare (Socialstyrelsen):
The Swedish Prescribed Drug Register (Läkemedelsregistret)
The National Patient Register, Inpatients (Patientregistret slutenvård)
The National Patient Register, Outpatients (Patientregistret öppenvård)
The Swedish Medical Birth Register (Medicinska födelseregistret)
The register data will be shared pseudonymized as raw data and no specific selection, except for gender and study site, or matching of study participants will be possible. NB! No prospective analysis is allowed using the register data. NB! To access register data, specific and mandatory requirements apply regarding the ethics application.
In the SCAPIS portal you will see the complete selection of all variables currently available.
Available data originates mainly from the SCAPIS core examinations (all sites). There is also some data from local substudies within SCAPIS - local researchers that have performed an extra investigation on some or all of the cohort participants at a particular site. Data from local substudies will be released gradually over time.
Specific approval for using data from local sub-studies & the pilot study
There are some restrictions on access to data in the SCAPIS database from local sub-studies. To gain access to data variables that belong to a local sub-study, approval of the sub-study responsible researcher is required. Data belonging to local sub-studies are marked in the Portal. Review of which data variables that are available and are interesting for your project is recommended already in the application planning stage. If any of the variables belong to a local sub-study, it is recommended that the responsible sub-study researcher is contacted in advance. For the SCAPIS pilot study, the same procedure applies. The responsible researcher is the PI for SCAPIS Gothenburg.
When applying for SCAPIS data
It is very important that you carefully read and follow the instructions and recommendations the SCAPIS project have presented on how to write the ethics application when applying for SCAPIS data. It can specifically be noted that to access register data, specific and mandatory requirements apply regarding the ethics application. All information you need to write the ethical application is available at scapis.org and can also be found here.
Identities in obtained data
All data released from SCAPIS is disclosed in a pseudonymous form where each SCAPIS participant is represented by an ID unique to each data set.
The complex task of building a management system for bioimages obtained in SCAPIS and biobank sample information is ongoing.
Data from approximately 100 local substudies will be possible to access successively under certain conditions. They will cover subjects such as microbiota, fitness, ecochardiography, sleep apnea and cognitive tests.
Bioimages (computer tomography, ultrasound and magnetic resonance imaging) for the complete cohort will be available for sharing successively in the fall of 2022. For researchers interested in utilizing SCAPIS images in their research, SCAPIS welcomes proposals on an ongoing basis. Contact scapis@scapis.org with a brief proposal to establish a personal contact.
A plan for the release of blood samples will be presented during 2022.
Genetics data and more advanced laboratory data will be released for the complete cohort 2022-2023.
SCAPIS can not offer services with specific selection or matching of study participants. When we are able to offer this service it will be announced in our newsletter and at scapis.org.