Frequently asked questions

This FAQ is for researchers, data stewards, research support functions, and Swedish organisations working with submission, data access, or organisational onboarding in FEGA Sweden.

Find answers by topic

General
What FEGA Sweden is, who it is for, costs, and support.

Organisational onboarding
How Swedish organisations prepare to use FEGA Sweden for submission and access handling.

Submission
What you can submit, how to start, timelines, accession numbers, and manuscript wording.

Data access
How researchers request access, receive decisions, and download approved data.

Discovery
Where datasets and public descriptions can be found.

General

What is FEGA Sweden?

FEGA Sweden is a Swedish service for sensitive human research data that need controlled access. It helps Swedish research organisations submit and store data and share them securely with approved researchers.

See About FEGA Sweden for more background.

How is FEGA Sweden related to EGA and Federated EGA?

FEGA Sweden is Sweden’s node in the Federated European Genome-phenome Archive (FEGA). FEGA is a formalised network of national nodes together with the European Genome-phenome Archive (EGA).

Data files submitted through FEGA Sweden are stored in Sweden. Public metadata are published in EGA, allowing researchers to find datasets and request access through the EGA website. FEGA Sweden is therefore the national route for Swedish organisations to make datasets discoverable there.

Is FEGA Sweden only for data from Swedish research organisations?

FEGA Sweden is primarily intended for sensitive human research data for which a Swedish research organisation is responsible.

The researchers involved in a project do not all need to be based in Sweden. International collaborators can be involved, and researchers outside Sweden may request access to datasets. Organisational onboarding and submission are handled with the Swedish organisation responsible for the data and under its own rules and decision-making.

Is FEGA Sweden suitable for sensitive personal data?

Yes. FEGA Sweden is designed for sensitive human research data that require controlled access, including data that may constitute personal data or sensitive personal data.

The organisation responsible for the data must still confirm that the planned submission and data sharing are permitted under the relevant legal and ethical requirements and the organisation’s own rules. This includes GDPR requirements, ethical approval, participant information, and any confidentiality rules that apply to the data.

Is FEGA Sweden free to use?

Yes. FEGA Sweden is currently free of charge for users and organisations. FEGA Sweden does not charge users or organisations to submit data or to request access to datasets.

If this changes in the future, we will update the information on this website and inform affected organisations through the established contact routes.

Who should I contact for support?

Please contact the FEGA Sweden Helpdesk for questions about FEGA Sweden, organisational onboarding, submission, or data access.

How quickly can I expect a response?

For general questions and submission requests, you can normally expect an initial response within one week.

The full timeline for a submission or access request may vary depending on the data, documentation, review process, and the organisation’s preparation.

Organisational onboarding

What does organisational onboarding mean?

Organisational onboarding means getting a Swedish organisation ready to use FEGA Sweden. It involves agreeing who does what and setting up the legal and practical details needed for secure submissions.

See Organisational onboarding for the full overview.

Which organisations should consider organisational onboarding?

Swedish organisations responsible for sensitive human research data should consider organisational onboarding if they want to enable submission and controlled data sharing through FEGA Sweden.

This may include universities, biobanks, healthcare-linked research organisations, and other research organisations that need a controlled-access route for sensitive biomedical data.

Which organisations are already onboarded?

The current list of organisations that are onboarded for submission to FEGA Sweden is available under Organisations already onboarded.

We are also working with additional organisations to complete organisational onboarding.

What are the benefits for my organisation?

Organisational onboarding makes it possible for a Swedish organisation to use FEGA Sweden consistently to submit and store data, make public descriptions findable, and share data with approved researchers.

It clarifies roles, contacts, legal arrangements, how access requests are handled, and the practical steps before submissions start.

See Organisational onboarding for the full overview.

How is information security handled?

Submitted files are encrypted before upload using an encryption method called Crypt4GH and stored and backed up on secure servers in Sweden. Access to sensitive data files requires approval by the organisation responsible for the data.

When access has been approved, FEGA Sweden also encrypts the approved files for secure download using the recipient’s public Crypt4GH key, which can be shared without revealing their private key.

Information security is also handled during organisational onboarding, where the organisation’s review process, documentation needs, and responsibilities are clarified.

If your organisation needs to assess FEGA Sweden from an information security, legal, or compliance perspective, please contact the FEGA Sweden Helpdesk.

What does organisational onboarding cover?

Organisational onboarding usually covers:

• roles and points of contact for submission and access requests
• who is responsible for decisions and the day-to-day procedures
• legal and GDPR arrangements, including a Data Processing Agreement (DPA) where applicable
• practical support for a first submission

The exact setup depends on the organisation, the data, and its own decision- making process.

What responsibilities remain with the organisation?

The organisation responsible for the data remains responsible for who may use the data, following legal and ethical requirements, the access conditions, and access decisions.

FEGA Sweden provides the technical service, support, and practical processes for submission, storage, finding data, and controlled access. It does not take over the organisation’s responsibility for ensuring that the data can be shared under the relevant ethical approval, participant information, legal basis, confidentiality rules, and local procedures.

Does a Data Processing Agreement mean that an organisation is onboarded?

Not necessarily. A Data Processing Agreement is often part of organisational onboarding, but it does not by itself mean that the organisation is ready to complete submissions through FEGA Sweden.

Full organisational onboarding also requires agreed roles, contacts, ways of working, and responsibilities for submission and access requests.

See Legal and GDPR arrangements and Your organisation’s role in a submission.

Who should contact FEGA Sweden about organisational onboarding?

A suitable first contact is usually someone at the Swedish organisation with responsibility for research data management, legal coordination, data protection, infrastructure, or support for researchers who need to share sensitive human data.

Individual researchers are also welcome to contact us. If organisational onboarding is needed, we can help identify the relevant next steps and contacts.

Can a researcher create a submission request before the organisation is onboarded?

Yes. A researcher can contact us or create a submission request before organisational onboarding has been completed.

This can help clarify whether FEGA Sweden is the right repository and whether organisational onboarding needs to be started with the organisation responsible for the data.

A submission request does not mean that data can be uploaded or that a full submission can proceed immediately.

How can an organisation get started with organisational onboarding?

Contact the FEGA Sweden team to discuss organisational onboarding.

It is helpful to include what type of organisation you represent, what kind of data or submissions you expect, and whether there is a concrete first submission that can be used as a practical starting point.

Contact the team

Can an organisation start onboarding before it has a specific submission?

Yes. An organisation can contact FEGA Sweden to discuss organisational onboarding before a specific submission is ready. A concrete first submission is often useful as a practical starting point, but it is not required for an initial discussion.

How long does organisational onboarding take?

There is no fixed timeframe for organisational onboarding. The work usually develops step by step, and some activities can happen in parallel.

The overall timeline depends on the organisation’s own decision-making, legal review, any DPIA work, and readiness for a first submission.

Contact the FEGA Sweden team early to discuss the likely next steps and timeline for your organisation.

Submission

What data can I submit to FEGA Sweden?

FEGA Sweden is intended for sensitive human research data that require controlled access.

This includes genetic, genomic, phenotypic, and related biomedical research data. If you are unsure whether FEGA Sweden is suitable for your data, see Is FEGA Sweden the right repository? for guidance.

Why submit data to FEGA Sweden rather than EGA directly?

For Swedish organisations, FEGA Sweden is generally the recommended national route into the European Genome-phenome Archive (EGA) for sensitive human research data under controlled access. Data files submitted through FEGA Sweden are stored in Sweden, while public descriptions are published in EGA so that researchers can find datasets and request access.

This can suit organisations that need Swedish arrangements for storage, data protection, and operational support. The organisation responsible for the data must still decide whether the setup meets its legal, ethical, and information security requirements.

Why submit data to FEGA Sweden rather than to a general institutional repository?

For sensitive human biomedical research data that require controlled access, FEGA Sweden is usually a more appropriate service because it is built to receive, describe, store, and share this type of data with approved researchers.

Institutional repositories can be useful for many research outputs and datasets, but they are often broad services for many disciplines. They may not support the standard way of describing data, access review, places where data can be found, and secure access processes expected for sensitive biomedical data. The FEGA Sweden team can support submitters with review of public data descriptions and links between studies, samples, experiments, analyses, and controlled-access files.

Public metadata for submitted datasets are published in EGA, allowing researchers to find them on the EGA website, where many biomedical researchers look for this type of data. They are also listed on Researchdata.se.

Can I submit data that does not require controlled access?

Usually not. If your data can be shared openly, another repository may be a better fit. FEGA Sweden is designed for data where access needs to be reviewed and approved before files are made available.

Will my data be made available to other researchers when I submit them?

No. Submitting data to FEGA Sweden does not by itself make sensitive data files available to other researchers.

Access can be provided later, and only if an access request is approved by the organisation responsible for the data.

See Legal roles in the submission process and the Data access overview.

Does my organisation need to be onboarded before data can be uploaded?

Usually, yes. Data can only be uploaded after the organisation responsible for the data has approved the upload.

However, the organisation must be onboarded before a submission can be completed.

If organisational onboarding is still in progress, FEGA Sweden can advise on what is possible after you create a submission request.

See Onboarding organisations and Your organisation’s role in a submission.

How do I get started with a submission?

Create a submission request as soon as you know that you may want to submit data to FEGA Sweden. The FEGA Sweden team will assess your case and guide you through the next steps.

You can also read Getting started with a submission to understand what may be needed during follow-up.

When should I start the submission process?

Start as early as possible once you know that the data will need to be submitted to a controlled-access service. You do not need to wait until your files and public descriptions are complete, or until a journal asks for EGA accession numbers.

An early submission request gives time to assess whether FEGA Sweden is the right repository, understand whether organisational onboarding may affect the next steps, identify legal and ethical questions for follow-up, and plan data and preparation of public descriptions. File upload and detailed work in the FEGA Sweden Submitter Portal happen later in the submission process.

If you expect to need EGA accession numbers for a manuscript, it is best to create a submission request well before journal submission or acceptance.

Do I need to prepare everything before creating a submission request?

No. The submission request starts the dialogue with FEGA Sweden.

Getting started with a submission explains how to check whether FEGA Sweden is suitable and what the Helpdesk will work through with you after your request. It also links to optional information on data files, dataset grouping, metadata, legal roles, and ethics documentation.

It is fine if not everything is clear yet. The submission request does not need to include information about the organisation legally responsible for the research, the organisation that decides how personal data are used, or ethics documentation. FEGA Sweden will ask about these matters during follow-up after the initial request, together with other information needed for the submission.

What if my ethical approval or participant information does not mention FEGA Sweden?

If your existing ethics documentation was written without data sharing through FEGA Sweden in mind, the organisation responsible for the research should assess whether the planned submission and future data sharing are covered by the existing documentation.

This assessment may depend on how access to the data will be handled, who may receive access, and whether data may be shared with recipients in Sweden or in another country. FEGA Sweden can help identify issues that may need attention, but the research project and the organisation responsible for the research need to decide what measures are required.

Depending on the situation, this may involve consulting local legal, data protection, or research support functions, or applying for a renewal of the ethical approval.

See Ethical approval for more information.

What can I write in participant information about data sharing and FEGA Sweden?

Participant information should explain that research data may be made available for future research under controlled access, and that each access request will be assessed before access is granted.

For Swedish ethical review applications, FEGA Sweden provides example wording that can be adapted for the section describing what will happen to participants’ data. The wording should be reviewed in the context of the specific research project, the planned data sharing, and the responsible organisation’s local requirements.

See Ethical approval for example wording and important limitations.

How long does a submission take?

The time needed for a submission can vary considerably. In straightforward cases where the data are well documented, responsibility for the personal data is clear, and the dataset structure is straightforward, a submission can normally be processed within a few weeks.

It can take longer if public descriptions or documentation need to be clarified, if the dataset structure or access conditions need further discussion, or if legal or organisational arrangements are not yet in place. FEGA Sweden can only complete submissions for onboarded organisations, so submissions that require organisational onboarding can take considerably longer.

Large data volumes can also affect the process, but upload time is normally not the main factor determining the overall timeline.

When you create a submission request, FEGA Sweden will normally send an initial response within one week.

When will I get accession numbers for my submitted data?

The EGA Study Accession ID and EGA Dataset Accession ID become available when the public descriptions are complete and the submission has been finalised in the FEGA Sweden Submitter Portal.

Before you click the Finalize button, contact the FEGA Sweden Helpdesk to review your metadata and provide feedback while it is still straightforward to make changes. Clicking the Finalize button sends the metadata to the Helpdesk for formal review.

Public information can remain on hold until the agreed release date. During this period, the accession numbers can be used in a manuscript, but other researchers cannot yet request access through EGA. Access requests become possible only after the public information has been published and the data can be found on the EGA website.

If you need EGA accession numbers for a manuscript or journal deadline, please mention this in your submission request or contact the FEGA Sweden Helpdesk.

Does FEGA Sweden provide DOIs for submitted data?

No. FEGA Sweden does not provide DOIs for submitted data. Instead, submitted studies and datasets receive EGA accession numbers.

EGA accession numbers can be used as persistent identifiers to cite or refer to submitted data. Persistent URLs can also be created through identifiers.org, for example:

• https://identifiers.org/ega.study:{insert EGA Study Accession ID}
• https://identifiers.org/ega.dataset:{insert EGA Dataset Accession ID}

For example, the dataset accession number EGAD50000002120 can be written as:

https://identifiers.org/ega.dataset:EGAD50000002120

Some journals or funders may use the term DOI when they mean a persistent identifier more generally. If a journal specifically requires a DOI, we recommend checking with the journal whether an EGA accession number and identifiers.org URL are acceptable.

What can I write in my manuscript’s data availability statement?

Many journals require a data availability statement explaining where the data are stored and how researchers can request access. This is usually publication wording for a manuscript, not something you need before creating a submission request.

If public metadata about your data has been published in EGA and the study has an EGA Study Accession ID, you can state that the data have been submitted to FEGA Sweden and can be found through the European Genome-phenome Archive website. The statement should also explain that access is controlled and granted only after approval according to the applicable access conditions.

If your submission is still in progress, you can state that work on submitting the data to FEGA Sweden has been initiated. In that case, it can also be useful to create a public record describing the data.

See Publish metadata and report data availability for guidance on metadata publication, EGA accession numbers, and suggested wording.

Data access

How do I request access to a dataset?

To request access, go to the relevant dataset page on the EGA website and follow the instructions there. The organisation responsible for the data reviews the request and decides whether access should be granted, using the decision process it has established for the dataset.

See the Data access overview for the full process.

Do I need an EGA account to request access?

It depends on the access procedure chosen by the organisation responsible for the data.

The dataset landing page on the EGA website should explain how to request access. If the organisation uses EGA’s system for handling access requests, the person requesting access needs to create an EGA account.

Can access be granted to researchers outside Sweden?

It depends on the access conditions and review process set by the organisation responsible for the data.

Researchers outside Sweden may request access to datasets in FEGA Sweden, but access is granted only if the request is approved by the organisation responsible for the data. Some organisations or datasets may have access conditions that limit where data can be shared.

How long does it take to process an access request?

The time needed to process an access request can vary. In straightforward cases, it may take a few weeks.

Access decisions are made by the organisation responsible for the data, not by FEGA Sweden. The timeline depends on the organisation’s access review process, the documentation needed for the request, and whether any legal, ethical, or practical questions need to be clarified before access can be granted.

Once access has been approved and the requester has sent us their public Crypt4GH encryption key, FEGA Sweden can normally make the approved files available for secure download within a few days.

What is a Data Access Committee in a Swedish context?

A Data Access Committee (DAC) is the role or group associated with a dataset that handles access requests in the EGA system.

In Sweden, the organisation responsible for the data decides how access requests are assessed and who is authorised to make access decisions. This does not have to be a formal committee.

At Swedish public authorities, such as Swedish universities, disclosure decisions are normally made according to the organisation’s delegation of authority. If a request concerns disclosure of confidential information containing sensitive personal data, an individual confidentiality and harm assessment must be made before access to data can be granted.

Who decides whether access is granted?

Access decisions are made by the organisation responsible for the data, not by FEGA Sweden. That organisation decides which internal function or role is responsible for assessing access requests and making disclosure decisions. Access requests can be rejected if they do not meet the access conditions or cannot be approved under the organisation’s review process.

FEGA Sweden supports the secure delivery of approved data once the access process has been completed.

How do I download approved files?

After access has been approved, FEGA Sweden prepares encrypted copies of the approved files. Before downloading them, you need to prepare your system by installing the required download tool and generating a Crypt4GH key pair.

See Prepare for download for step-by-step instructions.

Who should I contact if I have problems downloading or decrypting files?

If your access request has been approved but you have problems downloading or decrypting the approved files, please contact the FEGA Sweden Helpdesk.

Discovery

Where can I find datasets available through FEGA Sweden?

The most common way for researchers to find data available through FEGA Sweden is through the EGA website, where researchers can search and browse studies and datasets.

Datasets are also described on the FEGA Sweden catalogue, where dataset pages link onward to the corresponding EGA record on the EGA website where applicable. In addition, FEGA Sweden datasets are listed on Researchdata.se, the national research data portal, where public descriptions of the data can also be found.

Can I see public information before requesting access?

Yes. Public information about studies and datasets can be viewed on the EGA website before requesting access and can help you assess whether a dataset is relevant for your research.

Sensitive data files are not available for direct download. Access to files requires an approved access request according to the access conditions for the dataset.

Is all public metadata shown on the EGA website?

No. The EGA website does not display all public metadata on its study and dataset pages. Additional public metadata can be retrieved through the EGA Metadata API.

If you need help finding or using this information, please contact the FEGA Sweden Helpdesk.