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How do I get access to the Project data?

In order to protect Project participants' data, 100,000 Genomes Project data can only be accessed through a secure Research Environment. To access the data for research, you must be a member of the Genomics England Clinical Interpretation Partnership (GeCIP), the research community set up to analyse the Project data. You can apply to join the GeCIP on our websiteImage Modified.

To apply, your institution must have signed the GeCIP members do not get access to Participation Agreement, which outlines the key principles that members of each institution must adhere to, including our Intellectual Property and Publication Policy. All institutions available on the GeCIP application form meet this requirement.

You will not be able to access the Project data immediately. To be eligible for data access, you must meet these requirements:

  1. Your application to a GeCIP domain has been accepted (i.e. you are a an approved GeCIP member).
  2. Your institution has signed the GeCIP Participation Agreement, which outlines the key principles that members of each institution must adhere to, including our Intellectual Property and Publication Policy. As of 2019, your institution must have signed the agreement before you can apply to GeCIP. See if your institution has signed here.Your institution has verified you are affiliated with that institution. Each institution has a membership secretary who is in charge of verifying the institutions of new GeCIP members, and they are contacted when there are new members to review, so no action is required on your part. This verification step is necessary to make sure we know who is accessing the data, in line with the consent that Project participants have given.

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After the two steps above are complete, you will get an email asking you to carry out Information Governance training. Within two hours of passing this training, you will get an email confirming your access to the Research Environment (stage 3).

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I think I should have access to the data

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As above, each GeCIP member needs to be registered under an institution that has signed the GeCIP Participation Agreement, and verified their affiliation with that institution.

All domains that have had their Detailed Research Plan approved have been given access to the data. As of December 2019, 38 GeCIP domains have been granted access to the data, guided by the order of approval of their detailed research plans. These are:

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Rare disease

  • Neurology
  • Endocrine and metabolism

  • Hearing and sight
  • Inherited cancer predisposition
  • Renal
  • Cardiovascular
  • Immune disorders
  • Non-malignant haematological and haemostasis disorders
  • Musculoskeletal
  • Respiratory
  • Paediatrics
  • Skin

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Cancer

  • Colorectal cancer
  • Breast cancer
  • Lung cancer
  • Ovarian cancer
  • Prostate cancer
  • Cancer of unknown primary
  • Glioma
  • Haematological malignancy
  • Melanoma
  • Pan-cancer
  • Renal cell carcinoma
  • Sarcoma
  • Testicular cancer
  • Upper gastrointestinal cancer
  • Neuroendocrine tumours
  • Head and neck cancer
  • Childhood solid cancers

Cross-cutting

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Electronic health records

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Stratified medicine

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Population genomics

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Functional effects

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When happens when I get access to the data?

You will be sent an email containing a link to complete Information Governance training. This training is a requirement for you to access the data. After you have completed the training, you will need to wait for your access to the Research Environment to be granted. This will generally take up to one working day. You will then receive an email letting you know your account has been given access to the environment, and instructions for logging in.

If you already have a Research Environment account for other reasons, your account will be updated to give you access to the Main Programme data within the Research Environment, and you will receive an email informing you of this.

I can see the data even though some of my domains don't have access. Can I start work?

You may be a member of multiple GeCIP domains. If at least one of these domains has been given access and you meet the requirements above, you will have been given an account to access the data.

Although all domains can see all Project data (although their access to domain-specific shared folders differs), you should not start work on domain-specific analysis until your domain has been given access. Please see above for the domains who have access to data.

I think I should have access to the data. What should I do?

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. What should I do?

You should have received an email with your Research Portal login details when you applied, or in August 2020 if you applied before this date. You can use these to log into the Research PortalImage Added and track your application to see if you have access to log into the Research Environment and any steps remaining if not.

If you haven't received these details, or are having trouble logging in, please submit a ticket to the Genomics England Service Desk. (You will need to register for the Service Desk portal if it is your first time using it).

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