Putting Real World Rare Disease Data in Researcher's Hands

GETTING STARTED: Tips and Instructions for Researchers requesting access

All researchers interested in gaining access to patient-level, de-identified RARE-X data needs to complete these steps:

STEP 1: Request Access to RARE-X Data

This RARE-X Google form collects data about the researcher’s purpose, IRB study details, requested subsets of data, and potential need for support in analyzing data. Once this request is completed, it will be forwarded to the RARE-X Data Access Committee for review.

STEP 2: Register for an Account on Terra

(This can be done while waiting for the RARE-X data access review to be completed.)

Note:  Registration and Terra access requires both a Google Account & the Google Chrome browser.  (Google allows users to create an account linked to their current email address.)

STEP 3: Set up Billing

On Terra, you will be prompted to set up a billing account.  This account will only be used if you perform cloud-based computing analyses on the platform.

Terra offers $300 credits for users that are new to the GCP, which should be sufficient to fund research on the RARE-X data for a very long time!  Simple scripts run on the RARE-X data are likely to either incur no charge at all, or charge of less than $1. The $300 credit is more likely to be useful for moving and storing external data and running interactive or complex workflow analyses.

STEP 4: Access Data

Once the RARE-X Data Access Committee has approved research access, you will receive a notification with a link to access the data in a Terra workspace.  This data set will contain a clone of the subset of current RARE-X data, aligning with both:

  • Patient Data Sharing Preferences: In the RARE-X Data collection platform (DCP), patients own their data and control how it is used.  Some patients stipulate that their data can only be used for IRB-approved or non-commercial purposes, for example.
  • Researcher Needs & Questions: Researchers interested in data from all of the disease groups on the platform can gain access to that. Researchers who only want to access data from a specific disease or group of diseases can receive a filtered data set more tailored to their research interests.

STEP 5: USE the data!

Your Terra workspace is a computational sandbox where you can organize data and tools and run analyses.

To learn more about workspaces and all the other things you need to know to hit the ground running in Terra, check out the Knowledge Center.

If you are new to cloud computing and need help running analyses, reach out to:

Vanessa Vogel Farley @

Karmen Trzupek @


YES!  Most participants entering data on the RARE-X platform allow their data to be used by researchers without an explicit IRB-approved study protocol.

a. IF your analyses incur computing costs (and simple scripts on our data might not), that computing time will likely result in a charge of <$1 per analysis.  If you upload your own, more complex data to Terra, that may incur a higher charge, but is still probably very reasonable. 

b. Get $300 Google credits.  GCP credits will cover the cost of operations like moving and storing data and running interactive or workflow analyses.

NO –  You can follow these steps to create a Google Apps account associated with your existing email address:

1. Go to the Google sign-up page.

2. Under “Choose your username”, click “I prefer to use my current email address”

3. With your new Google account set up, you’ll be able to register for Terra with that email address.

a. RARE-X updates data monthly. 

b. How does the answer to this question change if I intend to:

1. Use data analysis tools natively in Terra

2. Download data


What is a Snapshot?  How is that different from a workspace? What is a workflow, and do I need to bring in my own?

Workspace: An environment containing shared data and tools.  When you first gain access to the RARE-X data, you will be provided with a workspace that includes a clone of the RARE-X data. This will have a name that enables both you and the RARE-X team to find it, including your name, a project name, and the date. 

Snapshots: Copies of data sets to enable researchers to work on data without affecting the original data set.  RARE-X will create a snapshot and pull it into a Terra workspace for your analyses.

Workflow: A way to create high throughput analyses. Many of these are pre-built into the Terra environment, such as genetic variant interpretation workflows.  Researchers can bring their own workflows into their workspace.  RARE-X is developing a set of workflows to be housed on Github for anyone using this data to access.

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