From caf9b9241a10cf6ef65cf07481ead3a2375f3d3d Mon Sep 17 00:00:00 2001 From: malloryfreeberg Date: Sat, 30 Jul 2022 16:31:03 +0100 Subject: [PATCH 1/8] Deleted index.md at root. --- index.md | 78 -------------------------------------------------------- 1 file changed, 78 deletions(-) delete mode 100644 index.md diff --git a/index.md b/index.md deleted file mode 100644 index 36113fd..0000000 --- a/index.md +++ /dev/null @@ -1,78 +0,0 @@ ---- -layout: default -title: FEGA Knowledge Base -nav_order: 1 ---- - -Federated EGA logo, colored logo of storage disk with human figure emerging from behind and the text Federated European Genome-phenome Archive on the right. - -# Establishing a Federated EGA Node - -Welcome to this collection of onboarding materials for establishing a Federated EGA Node! - -## What am I doing here? - -If you are reading this, you are probably looking for information on how to join the Federated EGA Network. Great! There is a lot of information here for you. - -These materials provide guidance for establishing a node in the Federated EGA Network. The materials are based on the knowledge and experiences of current nodes and their use cases. Your node's development might differ depending on your use cases and mandates from stakeholders. Please view these materials as suggestions and best practices - not hard requirements! - -## What is Federated EGA? - -**The Federated EGA is the primary global resource for discovery and access of sensitive human omics and associated data consented for secondary use, through a network of national human data repositories to accelerate disease research and improve human health.** - -Over the last 10 years, most individual-level human omics data have been generated in the context of research consortia and shared via global repositories such as the European Genome-phenome Archive (EGA). Many countries now have emerging personalized medicine programmes which are generating data from national or regional initiatives. Thus, human genomics is undergoing a step change from being a research-driven activity to one funded through healthcare initiatives. - -Genetic data generated in a healthcare context is subject to more stringent information governance than research data and often must comply with national legislation. To address this need, the Federated EGA provides a network of connected resources to enable transnational discovery of and access to human data for research while also respecting jurisdictional data protection regulations. By providing a solution to emerging challenges around secure and efficient management of human omics and associated data, the Federated EGA fosters data reuse, enables reproducibility, and accelerates biomedical research. - -Summary of responsibilities of Central EGA nodes (EMBL-EBI & CRG) and Federated EGA nodes (national/local jurisdictions): - -| Central EGA Node | Federated EGA Node | -| ---------------- | ------------------ | -| Hosts data | Hosts and/or owns data | -| Shares metadata & allows global discovery | Shares metadata to allow global discovery | -| Accepts data from all around the world | Accepts 3rd party data from jurisdiction | -| Has Helpdesk for Central EGA data | Has Helpdesk responsible for own data/jurisdiction | -| Chairs the Federated EGA Committees | Participates actively in the Federated EGA Committees | -| No time commitment for FEGA | Expected to stay in FEGA for at least 4 years | - - -## How do I start? - -The [ELIXIR Federated Human Data Community (FHD)](https://elixir-europe.org/communities/human-data) provides a framework for the secure submission, archival, dissemination, and analysis of sensitive human data across Europe, and wider. All Federated EGA communications are sent through the following open channels, join us! - -| Entry point | Information | -| ----------- | ----------- | -| ELIXIR FHD Mailing list | [join us here](https://elixir-europe.org/intranet/join-groups), select "Human Data" | -| ELIXIR FHD Community Calls | [Agenda](https://docs.google.com/document/d/10OwVvHbJ7i1gI1Iw4zmVsOs8kDrG077Y52juehiFcmU/edit), 1st Tuesday of the month, 2pm CEST| - - -If you are involved in **governance or legal aspects** of establishing a Federated EGA node, we suggest starting by reviewing information [here](https://ega-archive.github.io/FEGA-onboarding/docs/topics/governance-legal/). Typically this information is most useful for data protection officers, data stewards, policy makers, and strategic decision makers. - -If you are involved in **technical or operational aspects** of establishing a Federated EGA node, we suggest starting by reviewing information [here](https://ega-archive.github.io/FEGA-onboarding/docs/topics/technical-operational/). Typically this information is most useful for software developers and engineers, bioinformaticians, and support officers. - -If you are involved in **data and metadata management** for establishing a Federated EGA node, we suggest starting by reviewing the information [here](https://ega-archive.github.io/FEGA-onboarding/docs/topics/data-metadata-management/). Typically this information is most useful for bioinformaticians, data stewards, and support officers. - -If you are involved in **outreach or training aspects** of establishing a Federated EGA node, we suggest starting by reviewing the information [here](https://ega-archive.github.io/FEGA-onboarding/docs/topics/outreach-training/). Typically this information is most useful for data stewards, support officers, outreach/communications officers, and training organisers. - -## What does the journey look like? - -Based on current experiences, governance and legal development of a node usually happens in parallel with technical and operational development. You may find your path differs slightly for a variety of reasons - that's ok! - -One typical path for becoming a full Federated EGA member: - -Colored diagram with icons and descriptions of technical and governance steps an interested Federated EGA node needs to complete to join the Network. - -These materials guide you through onboarding information from the experiences of other nodes. Take what you find useful to apply to your own node development. - -There is no time limit on establishing a Federated EGA Node. Onboarding will take more or less time depending on existing infrastructure and governance models, availability of funding and resources, user needs, and other factors. - -## Acknowledgements - -We would like to thank all contributors, especially those mentioned in the [Contributors list](CONTRIBUTORS.yaml), the Federated EGA community for their support, and our funding partners. - -Please see our [contributing guide](CONTRIBUTING.md) for information on how to contribute to the generation and maintenance of these materials. Thank you in advance for your contributions! - -## License - -The content of the FEGA onboarding materials and website are licensed under the [Creative Commons Attribution Share Alike 4.0 International License](https://creativecommons.org/licenses/by-sa/4.0/). - From 233fc89a400123572a635fd4bfbb352e298d6fa5 Mon Sep 17 00:00:00 2001 From: malloryfreeberg Date: Sat, 30 Jul 2022 16:37:32 +0100 Subject: [PATCH 2/8] Reduced icon size. --- docs/index.md | 2 +- 1 file changed, 1 insertion(+), 1 deletion(-) diff --git a/docs/index.md b/docs/index.md index 83f014e..91c7e6b 100644 --- a/docs/index.md +++ b/docs/index.md @@ -4,7 +4,7 @@ title: FEGA Knowledge Base nav_order: 1 --- -Federated EGA logo, colored logo of storage disk with human figure emerging from behind and the text Federated European Genome-phenome Archive on the right. +Federated EGA logo, colored logo of storage disk with human figure emerging from behind and the text Federated European Genome-phenome Archive on the right. # Establishing a Federated EGA Node From 33c13b826e43b927bca40f959d2955b3e69ddb6d Mon Sep 17 00:00:00 2001 From: malloryfreeberg Date: Sat, 30 Jul 2022 16:39:24 +0100 Subject: [PATCH 3/8] Reduced icon size again. --- docs/index.md | 2 +- 1 file changed, 1 insertion(+), 1 deletion(-) diff --git a/docs/index.md b/docs/index.md index 91c7e6b..4558d0a 100644 --- a/docs/index.md +++ b/docs/index.md @@ -4,7 +4,7 @@ title: FEGA Knowledge Base nav_order: 1 --- -Federated EGA logo, colored logo of storage disk with human figure emerging from behind and the text Federated European Genome-phenome Archive on the right. +Federated EGA logo, colored logo of storage disk with human figure emerging from behind and the text Federated European Genome-phenome Archive on the right. # Establishing a Federated EGA Node From 952d17faa01c3189dc944fef4f84c00abc14231a Mon Sep 17 00:00:00 2001 From: malloryfreeberg Date: Sat, 30 Jul 2022 16:40:53 +0100 Subject: [PATCH 4/8] Reduced icon size again. --- docs/index.md | 2 +- 1 file changed, 1 insertion(+), 1 deletion(-) diff --git a/docs/index.md b/docs/index.md index 4558d0a..97535bc 100644 --- a/docs/index.md +++ b/docs/index.md @@ -4,7 +4,7 @@ title: FEGA Knowledge Base nav_order: 1 --- -Federated EGA logo, colored logo of storage disk with human figure emerging from behind and the text Federated European Genome-phenome Archive on the right. +Federated EGA logo, colored logo of storage disk with human figure emerging from behind and the text Federated European Genome-phenome Archive on the right. # Establishing a Federated EGA Node From 96cd196daf6d9e9a1684591111126bcfa28e9a8b Mon Sep 17 00:00:00 2001 From: malloryfreeberg Date: Sat, 30 Jul 2022 16:44:34 +0100 Subject: [PATCH 5/8] Reduced icon size again. --- docs/index.md | 2 +- 1 file changed, 1 insertion(+), 1 deletion(-) diff --git a/docs/index.md b/docs/index.md index 97535bc..c5b11a4 100644 --- a/docs/index.md +++ b/docs/index.md @@ -4,7 +4,7 @@ title: FEGA Knowledge Base nav_order: 1 --- -Federated EGA logo, colored logo of storage disk with human figure emerging from behind and the text Federated European Genome-phenome Archive on the right. +Federated EGA logo, colored logo of storage disk with human figure emerging from behind and the text Federated European Genome-phenome Archive on the right. # Establishing a Federated EGA Node From bcb49710f832f03a570bc6accfe602c95f26b8c7 Mon Sep 17 00:00:00 2001 From: malloryfreeberg Date: Mon, 8 Aug 2022 12:16:49 +0100 Subject: [PATCH 6/8] Modified first steps. --- docs/index.md | 12 ++++-------- 1 file changed, 4 insertions(+), 8 deletions(-) diff --git a/docs/index.md b/docs/index.md index c907261..7e8223f 100644 --- a/docs/index.md +++ b/docs/index.md @@ -39,16 +39,12 @@ Summary of responsibilities of Central EGA nodes (EMBL-EBI & CRG) and Federated ## How do I start? -The [ELIXIR Federated Human Data Community (FHD)](https://elixir-europe.org/communities/human-data) provides a framework for the secure submission, archival, dissemination, and analysis of sensitive human data across Europe, and wider. All Federated EGA communications are sent through the open channels listed below. Welcome to join us! +The [ELIXIR Federated Human Data (FHD) Community](https://elixir-europe.org/communities/human-data) provides a framework for the secure submission, archival, dissemination, and analysis of sensitive human data across Europe, and wider. All Federated EGA communications are currently sent through the ELIXIR FHD open channels. Welcome to join us! -| Entry point | Information | -| ----------- | ----------- | -| ELIXIR FHD Mailing list | [join us here](https://elixir-europe.org/intranet/join-groups), select "Human Data" | -| ELIXIR FHD Community Calls | [Agenda](https://docs.google.com/document/d/10OwVvHbJ7i1gI1Iw4zmVsOs8kDrG077Y52juehiFcmU/edit), 1st Tuesday of the month, 2pm CEST| +1. **Join the [ELIXIR FHD Mailing List](https://elixir-europe.org/intranet/join-groups)** (select "Human Data") to hear about the latest updates and events from the FHD community. +1. **Attend the [ELIXIR FHD Community Calls](https://docs.google.com/document/d/10OwVvHbJ7i1gI1Iw4zmVsOs8kDrG077Y52juehiFcmU/edit)** to engage with the FEGA community. Meetings are the 1st Tuesday of the month @ 2pm CEST. -
- -If you want to learn more about Federated EGA, we suggests that you start reading about the aspects that interest you the most. Choose from the following areas: +Now that you are connected to the Federated Human Data community, you can learn more about Federated EGA specifically. **Read about the areas that interest you the most** (in no particular order): * **[Governance and legal aspects](topics/governance-legal/)** of establishing a Federated EGA node. Typically most useful for data protection officers, data stewards, policy makers, and strategic decision makers. From 241b49fe0265f61abcc04c7f6a97df08a76feea0 Mon Sep 17 00:00:00 2001 From: malloryfreeberg Date: Mon, 8 Aug 2022 13:34:00 +0100 Subject: [PATCH 7/8] Updated description of path image. --- docs/index.md | 6 ++---- 1 file changed, 2 insertions(+), 4 deletions(-) diff --git a/docs/index.md b/docs/index.md index 7e8223f..669eb20 100644 --- a/docs/index.md +++ b/docs/index.md @@ -56,13 +56,11 @@ Now that you are connected to the Federated Human Data community, you can learn ## What does the journey look like? -Based on current experiences, governance and legal development of a node usually happens in parallel with technical and operational development. You may find your path differs slightly for a variety of reasons - that's ok! - -One typical path for becoming a full Federated EGA member: +Displayed below are the steps a node must take to become a full member of the Federated EGA network. Based on current experiences, governance and legal development of a node (red, top-right path) usually happens in parallel with technical and operational development (yellow, bottom left path). Development converges when a node is ready to present to the Federated EGA Strategic Committee and sign the Federated EGA Legal (Collaboration) Agreement. You may find that your node's path differs slightly for a variety of reasons - that's ok! Colored diagram with icons and descriptions of technical and governance steps an interested Federated EGA node needs to complete to join the Network. -These materials guide you through onboarding information from the experiences of other nodes. Take what you find useful to apply to your own node development. +The materials on this website guide you through onboarding information from the experiences of other nodes. Explore the topics using the navigation panel on the left. Take what you find useful to apply to your own node development. There is no time limit on establishing a Federated EGA Node. Onboarding will take more or less time depending on existing infrastructure and governance models, availability of funding and resources, user needs, and other factors. From 15b6667c1f84599494f12d5c0cc38178de929acf Mon Sep 17 00:00:00 2001 From: malloryfreeberg Date: Mon, 8 Aug 2022 14:04:24 +0100 Subject: [PATCH 8/8] Added reqs for steps. Fixes #27. --- docs/topics/governance-legal/index.md | 27 +++++++++++++++++++++------ 1 file changed, 21 insertions(+), 6 deletions(-) diff --git a/docs/topics/governance-legal/index.md b/docs/topics/governance-legal/index.md index 34ea4a3..f47d5ee 100644 --- a/docs/topics/governance-legal/index.md +++ b/docs/topics/governance-legal/index.md @@ -55,10 +55,6 @@ Additional **Federated EGA Working Groups** are established, as needed. Working Inclusion in the Federated EGA is codified by signing of the [Federated EGA Collaboration Agreement](TBD) between Central EGA (represented by the European Molecular Biology Laboratory and Fundació Centre De Regulació Genòmica) and the Federated EGA node. -Check out the pathway to becoming a Federated EGA node which outlines governance (as well as technical) steps to join the Federated EGA Network: - -Colored diagram with icons and descriptions of technical and governance steps an interested Federated EGA node needs to complete to join the Network. - ### Data Processing Agreement (DPA) As Central EGA is a Data Processor under GDPR definitions, all data submitters are required to agree to and sign the [EGA Data Processing Agreement](https://ega-archive.org/files/EGA_Data_Processing_Agreement_v1.1.pdf). Federated EGA nodes also acting as Data Processors will require a similar agreement outline the roles and responsibilities of Data Processors, Data Controllers, and Data Requestors. @@ -67,11 +63,30 @@ As Central EGA is a Data Processor under GDPR definitions, all data submitters a Coming soon! -## 3. Explore additional resources +## 3. Complete steps to join Federated EGA + +The pathway to becoming a Federated EGA node includes governance/legal steps (red, top-right path) that must be completed: + +Colored diagram with icons and descriptions of technical and governance steps an interested Federated EGA node needs to complete to join the Network. + +* **Contact FEGA with intent to join**. This step can be accomplished by engaging in the ELIXIR FHD Community ("[How do I start?](https://ega-archive.github.io/FEGA-onboarding/#how-do-i-start)") or by contacting Mallory Freeberg or Amy Curwin. +* **Present use cases to ELIXIR FHD Community; Complete FEGA Use Case Survey**. Nodes are encouraged to present at an ELIXIR FHD Community Call on topics related to: 1) national use cases for managing sensitive human omics, phenotype, and clinical data; 2) current challenges for managing sensitive human data; 3) solutions/initiatives planned or in progress to meet these challenges; and 4) how Federated EGA fits in to the node's overall goals. Some examples of previous presentations from nodes: + * [Canada](https://drive.google.com/file/d/1qZ4YqlKwCuerIcjSfijUGhvaVQy8iMWf/view?usp=sharing) + * [Germany](https://docs.google.com/presentation/d/1mpTQhBt69reQz3Viju3EWPSi50sdfFy6rBO__gyznK8/edit?usp=sharing) + * [Norway](https://drive.google.com/file/d/1Zl6KrKefo2bxV6czTmct7XJYMSX2PP7j/view?usp=sharing) + * [Portugal](https://docs.google.com/presentation/d/1GC65umfBmeNH2T6eFGlJwsPe4JajBKIpirAtkEXj2Fc/edit?invite=CLT52HQ#slide=id.p1) + * [Romania](https://docs.google.com/presentation/d/1f9OcWKrOeYbkk-zLjhsAR6A13gH1_Ao9hEimXWO49vc/edit?usp=sharing) + * [Slovenia](https://docs.google.com/presentation/d/10ykS6GO5P4VprVIPiE95ze00qLrjv6BwsvWFsPom_CA/edit?usp=sharing) + * [Switzerland](https://drive.google.com/file/d/1QPqO_4-5utYt6G761KdPSMT7uOzMllxn/view?usp=sharing) + * [Sweden](https://drive.google.com/file/d/1PzcC--fCTJ75sPVjOfemxwN2PkWisGIZ/view?usp=sharing) +* **Perform FEGA Maturity Model self-assessment**. This step can be accomplished by [evaluating your node against the Maturity Model](https://ega-archive.github.io/FEGA-onboarding/topics/maturity-model/#2-evaluate-against-the-fega-maturity-model). +* **Sign FEGA Legal Agreement**. Also called the "FEGA Collaboration Agreement", this is the final step to official join the Federated EGA. + +## 4. Explore additional resources - More about [EU GDPR](https://gdpr-info.eu/). - Training materials developed by ELIXIR-Luxembourg on [data protection in biomedical research](https://zenodo.org/record/5078280#.YrxoEOxKjjD) -## 4. What's next? +## 5. What's next? Coming soon!