Date: Fri, 29 Mar 2024 01:15:16 +0000 (GMT)
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Subject: Exported From Confluence
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How do I=
get access to 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 m=
ust be a member of the Genomics England Clinical Interpretation Partnership=
(GeCIP), the research community set up to analyse the Project dat=
a. You can apply to join the GeCIP on our =
website.
To be eligible for data access, you must meet these requirements:
- Your application to a GeCIP domain has been accepted.
- Your institution has signed the GeCIP Participation Agreement
, which outlines the key principles that members of each institution mu=
st adhere to, including our Intellectual Property and Publication Policy. A=
s of 2019, your institution must have signed the agreement before you can a=
pply to GeCIP. See if your institution has signed here.
- Your institution has verified you are affiliated with that instit=
ution. We contact institutions regularly to ask them to review their curren=
t list of affiliated GeCIP members, so no action is required on your part. =
This step is necessary to make sure we know who is accessing the data, in l=
ine with the consent that Project participants have given.
=
- Your domain has submitted a Detailed Research Plan and it ha=
s been approved by the Genomics England Access Review Committee. The majori=
ty of domains meet this requirement. See the status of your do=
main's detailed research plan here=
.
Certain other individuals have access to some of the Project data. For e=
xample, students on the MSc Genomic Medicine=
have in the past been given access to a small subset of data for teaching =
purposes, approved individuals from certain commercial companies have acces=
s to some data for research, and individuals involved in the pilot phase of=
the programme have access to pilot data.
How long will it take to get access to data after I apply to=
GeCIP?
After you apply to join GeCIP, the following steps need to take place:=
p>
- Your application is sent to the relevant domain lead(s).
- Your application is reviewed by the domain lead(s): this can take up to=
10 working days).
- Your details are sent to your institution so they can verify your affil=
iation: this can be immediate (if the institution has agreed to "auto-verif=
y" those with affiliated email addresses), but can often take weeks or even=
months. We cannot guarantee a timeframe for these step to be completed bec=
ause it depends on your institution.
- Your details are sent for account creation: this occurs in batches ever=
y 10 working days, and accounts may be created a few days after details are=
sent.
A system is being built to automate this process, but currently it requi=
res a lot of manual steps and input from different parties, meaning it is n=
ot generally feasible to "fast-track" applicants through the process. Please apply well before you require data access.
Why don't all GeCIP members have access to the data yet?
As above, each GeCIP member needs to be registered under an institution =
that has signed the GeCIP Participation Agreement, and verified their affil=
iation with that institution.
All domains that have had their Detailed Research Plan approved have bee=
n 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 detai=
led research plans. These are:
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
|
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
|
Whe=
n happens when I get access to the data?
You will be sent an email containing a link to complete Information Gove=
rnance 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 acce=
ss to the Research Environment to be granted. This will generally take up t=
o one working day. You will then receive an email letting you know your acc=
ount has been given access to the environment, and instructions for logging=
in.
If you already have a Research Environment account for other reasons, yo=
ur account will be updated to give you access to the Main Programme data wi=
thin the Research Environment, and you will receive an email informing you =
of this.
I can see the data even though some of my do=
mains 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 domai=
n-specific analysis until your domain has been given access. Please see abo=
ve for the domains who have access to data.
I think I should have access to the data. What should I do?<=
br>
If you are a GeCIP member, your domain has been granted access, and your=
institution has signed the Participation Agreement =
and verified your affiliation, you should have had an account created to ac=
cess the data. Accounts are created in batches every 2-3 weeks rather than =
individually, so please allow up to a few weeks after verification to recei=
ve your details. If you still haven't received account details, please subm=
it 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).
If your institution or email address changes, please let us know by subm=
itting a ticket as above, so that your details are sent to the right place.=
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