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2 changes: 1 addition & 1 deletion pages/national_resources/es_resources.md
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Expand Up @@ -74,7 +74,7 @@ Non-exhaustive list of research institutions with Data Management Policies in Sp
A collection of general and topic-specific resources has been compiled to help streamline data management practices and protect research data. These resources aim to boost productivity while ensuring research is conducted in a compliant, transparent, and reproducible manner.

### Federated European Genome-phenome Archive (FEGA) Spanish node
The FEGA is the primary European resource for discovering and accessing sensitive human -omics- data consented for secondary use. The network comprises national repositories that ensure data remains in local jurisdictions while being discoverable through the main EGA portal and accessed across international borders in a federated manner. The [Spanish National Bioinformatics Institute (INB)](https://inb-elixir.es/), as the ELIXIR node in Spain, and in collaboration with the EGA team at the [Centre for Genomic Regulation (CRG)](https://www.crg.eu/), has established the [Spanish Federated EGA node (ES-FEGA)](https://f1000research.com/posters/11-607), primarily hosted at [BSC](https://www.bsc.es/) facilities.
The {% tool "fega" %} is the primary European resource for discovering and accessing sensitive human -omics- data consented for secondary use. The network comprises national repositories that ensure data remains in local jurisdictions while being discoverable through the main EGA portal and accessed across international borders in a federated manner. The [Spanish National Bioinformatics Institute (INB)](https://inb-elixir.es/), as the ELIXIR node in Spain, and in collaboration with the EGA team at the [Centre for Genomic Regulation (CRG)](https://www.crg.eu/), has established the [Spanish Federated EGA node (ES-FEGA)](https://f1000research.com/posters/11-607), primarily hosted at [BSC](https://www.bsc.es/) facilities.

### Spanish COVID-19 Data Portal
The [Spanish COVID-19 Data Portal](https://www.covid19dataportal.es/) provides information, guidelines, tools and services to support researchers in utilising Spanish and European infrastructures for data sharing, in particular the [European COVID-19 Data Portal](https://www.covid19dataportal.org/). For those interested in ongoing large research projects in Spain, we have compiled a list of projects funded by major funding agencies.
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2 changes: 1 addition & 1 deletion pages/national_resources/no_resources.md
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Expand Up @@ -314,7 +314,7 @@ ELIXIR Norway offers the comprehensive NeLS tool assembly for researchers in Nor

### Federated European Genome-phenome Archive (EGA) Norway node

Established by ELIXIR Norway and hosted by the University of Oslo, the Norwegian Federated EGA node provides a secure, controlled platform for sharing and archiving sensitive personal data. This service prioritises making sensitive data findable, accessible, interoperable, and reusable (FAIR) while fully complying with GDPR and the Norwegian Personal Data Act. You can boost the visibility of your datasets while maintaining control over access permissions with a designated data access committee. Learn more at the [Norwegian node of the European genome-phenome archive for sensitive human (genetic) data](https://ega.elixir.no/).
Established by ELIXIR Norway and hosted by the University of Oslo, the Norwegian node of {% tool "fega" %} provides a secure, controlled platform for sharing and archiving sensitive personal data. This service prioritises making sensitive data findable, accessible, interoperable, and reusable (FAIR) while fully complying with GDPR and the Norwegian Personal Data Act. You can boost the visibility of your datasets while maintaining control over access permissions with a designated data access committee. Learn more at the [Norwegian node of the European genome-phenome archive for sensitive human (genetic) data](https://ega.elixir.no/).

### Norwegian tools assembly for sensitive personal data

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4 changes: 2 additions & 2 deletions pages/tool_assembly/csc_assembly.md
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Expand Up @@ -63,8 +63,8 @@ For management of sensitive data, the [SD Connect](https://research.csc.fi/-/sd-


### Data sharing and publishing
It is recommended to [publish](data_publication) data in data specific repositories. You can find many options from {% tool "elixir-deposition-databases-for-biomolecular-data" %}. Furthermore, CSC and ELIXIR-FI will offer Federated EGA for sensitive human biomedical data that is linked to the central {%tool "the-european-genome-phenome-archive" %}
It is recommended to [publish](data_publication) data in data specific repositories. You can find many options from {% tool "elixir-deposition-databases-for-biomolecular-data" %}. Furthermore, CSC and ELIXIR-FI will offer {% tool "fega" %} for sensitive human biomedical data that is linked to the central {%tool "the-european-genome-phenome-archive" %}

The Finnish Federated EGA is part of a European network of repositories for biomedical data. The service will give you the tools to describe your dataset (adding the appropriate metadata) and assigning an EGA accession number.  After publication, you will remain the data controller and decide according to specific policies, who can access the sensitive data for reuse. According to the GDPR, your data will remain within the Finnish borders and, at the same time, they will be accessible and discoverable according to FAIR data principles.
The Finnish node of {% tool "fega" %} is part of a European network of repositories for biomedical data. The service will give you the tools to describe your dataset (adding the appropriate metadata) and assigning an EGA accession number.  After publication, you will remain the data controller and decide according to specific policies, who can access the sensitive data for reuse. According to the GDPR, your data will remain within the Finnish borders and, at the same time, they will be accessible and discoverable according to FAIR data principles.

In addition to the above mentioned services, you can use national [Fairdata.fi services](https://research.csc.fi/-/fairdata-services). Fairdata IDA storage service enables saving, organising and sharing data within the project group and storing the data in an immutable state. After freezing your data in IDA, you can use Qvain, the research dataset description tool, to describe your data and thus create core metadata for your dataset, and publish it. Publishing means that your dataset will be published in Etsin, the research data finder, where you can discover and download any files you have associated with the dataset. Any published dataset is also made available to the [Research.fi](https://research.fi/en/) portal automatically by Fairdata services.
2 changes: 1 addition & 1 deletion pages/tool_assembly/tsd_assembly.md
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Expand Up @@ -62,4 +62,4 @@ The computing services provided through TSD include an Illumina DRAGEN (Dynamic

### Data Sharing and Preservation

One solution for permanent archiving and sharing of personally identifiable genetic and phenotypic datasets resulting from biomedical research data is to deposit them to the {% tool "the-european-genome-phenome-archive" %}. The EGA applies a controlled access model. There can be limitations, e.g. given consents, for your datasets which prevents them from leaving your jurisdiction or being archived in general. This is partly addressed by federated EGA services with nodes operating from one country or institution under one specific jurisdiction. This model enables discovery of publicly shareable metadata about studies/datasets archived at the federated EGA nodes through the Central EGA, while the remaining data is stored in a local solution. The federated EGA nodes offer the same APIs as the Central EGA and provide independent data distribution to users. The [Norwegian Federated EGA](https://ega.elixir.no/) is accessible through {% tool "life-science-login" %}, compatible with [Feide](https://www.feide.no/).
One solution for permanent archiving and sharing of personally identifiable genetic and phenotypic datasets resulting from biomedical research data is to deposit them to the {% tool "the-european-genome-phenome-archive" %}. The EGA applies a controlled access model. There can be limitations, e.g. given consents, for your datasets which prevents them from leaving your jurisdiction or being archived in general. This is partly addressed by {% tool "fega" %} services with nodes operating from one country or institution under one specific jurisdiction. This model enables discovery of publicly shareable metadata about studies/datasets archived at the federated EGA nodes through the Central EGA, while the remaining data is stored in a local solution. The federated EGA nodes offer the same APIs as the Central EGA and provide independent data distribution to users. The [Norwegian Federated EGA](https://ega.elixir.no/) is accessible through {% tool "life-science-login" %}, compatible with [Feide](https://www.feide.no/).
2 changes: 1 addition & 1 deletion pages/your_domain/human_data.md
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Expand Up @@ -137,7 +137,7 @@ It is a good ethical practice to ensure that data underlying research is preserv
### Solutions
* {% tool "ga4gh-data-security-toolkit" %}
* {% tool "iso-iec-27001" %} is an international information security standard adopted by data centres of some universities and research institutes.
* {% tool "the-european-genome-phenome-archive" %} is an international service for secure archiving and sharing of all types of personally identifiable genetic and phenotypic data resulting from biomedical studies and healthcare centres. All services are free of charge. The EGA stores the data and metadata long-term, without ending date of the service. The data is backed-up in two separate geographical locations. The storing is GDPR-compliant, thanks to the use of [Ga4GH encryption standard](https://www.ga4gh.org/news/crypt4gh-a-secure-method-for-sharing-human-genetic-data/) and continuously kept up-to-date. National repositories working as Federated EGA nodes are available in some countries like Sweden, Norway, Finland, Germany and Spain. Those may address specific additional national legal needs, not included in European regulation.
* {% tool "the-european-genome-phenome-archive" %} is an international service for secure archiving and sharing of all types of personally identifiable genetic and phenotypic data resulting from biomedical studies and healthcare centres. All services are free of charge. The EGA stores the data and metadata long-term, without ending date of the service. The data is backed-up in two separate geographical locations. The storing is GDPR-compliant, thanks to the use of [Ga4GH encryption standard](https://www.ga4gh.org/news/crypt4gh-a-secure-method-for-sharing-human-genetic-data/) and continuously kept up-to-date. National repositories working as {% tool "fega" %} nodes are available in some countries like Sweden, Norway, Finland, Germany and Spain. Those may address specific additional national legal needs, not included in European regulation.
* {% tool "dpia-knowledge-model" %} is a DSW knowledge model guiding users through a set of questions to collect information necessary for a research project Data Protection Impact Assessment (DPIA).

## Sharing and reusing of human data
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