The Kids First Data Resource Center is responsible for collecting clinical data from X01 recipients, reviewing it for quality and completion, and harmonizing these datasets to be paired with the X01’s genomic data as well as other studies in the Kids First Program.
In order to manage these large clinical data submissions, the Kids First DRC has developed the Kids First Data Tracker (https://data-tracker.kidsfirstdrc.org/) an application developed by the Kids First DRC which serves as an organizing service for submitted and curated files from our X01 partners and data submitters.
The Data Tracker is an innovative approach to help manage versioned manifests, clinical and phenotypic data files, and other important study documents. By using versioned documents in a workspace that can be accessed by both the DRC and our X01 collaborators, we are able to avoid complications associated with sharing files through email.
Any user who will be uploading or reviewing clinical data as a part of your X01 needs an account on the Kids First Data Tracker.
You should receive an email invitation from the Kids First DRC to create an account on the Data Tracker. This invitation includes a link to follow that will allow you to create an account and receive immediate access to the Project workspace associated with your X01.
If you do not see an invitation in your inbox, check your email account’s spam folder. These email invitations are sometimes filtered by users’ spam filters.
If you have not received an invitation by email, you can create your own account by clicking the Sign Up button on the Data Tracker Log In page. This will allow you to log in, but you will be unable to access any of your project workspaces without contacting the Kids First DRC. Once you have created an account, send an email to [email protected] with your email address you signed up with to request being added to the appropriate project(s).
Signing up for an account on the Kids First Data Tracker. You will need to email your new account to the Kids First DRC to receive access to your specific project.
The Kids First DRC receives clinical data from dozens of research groups, each with their own system of organization and labeling their clinical data. In order to produce harmonized datasets, the DRC must convert data from these groups into a single, unified format with accepted fields and values. We have made these fields and values available to you through our data templates.
While not required, we strongly encourage all X01 groups to format their clinical data according to our provided clinical data templates. By using these templates, you will decrease the amount of time your project spends in clinical data review, resulting in quicker approval to access your genomic data. This will also enable the DRC to more rapidly process all Kids First studies within our queue.
Note that the Kids First DRC’s clinical data templates may not encompass all of the clinical data you wish to submit. Different groups may have specific fields that are not represented in our general data template. This is ok - we are able to accept new fields specific to your project, especially if they were approved as part of your original X01 submission.
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