Data and Sample Share Request Form 

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This form is designed for two primary purposes: 
• to solicit data counts from the CARRA Registry and;
• to request access to CARRA Registry data and/or biosamples

Requests should be initiated by the primary or principal investigator, utilizing their organization-issued email address. If you would like to know more about who can access CARRA data and biosamples, conditions of use, and the review process, please review our data and sample share policy.

Please review the Data and Sample Requests section of the CARRA Research Portal before placing your request. Additional information can be found here on how to prepare your request and the request submission process, including required information and documentation.

You may save your progress and return at a later time to submit this form. If you wish to save your progress, please select ‘save my progress and resume later’ and enter your email address and password. You will receive email confirmation that your responses were saved. 
We will ask you to name investigators filling two roles.
 
The PRINCIPAL INVESTIGATOR (abbreviated PI) is the individual formally responsible for how CARRA data/samples are employed. The PI should generally be a full CARRA member, and therefore an attending pediatric rheumatologist or other faculty member (rather than a student, fellow or other trainee). Requests for which the PI is not a CARRA member will undergo additional review to ensure that the research is concordant with the CARRA mission.  
 
The PROJECT LEAD (abbreviated PL) is the person spearheading the project. This person may be the PI, or could be a student, resident, fellow, research coordinator, or non-CARRA investigator  working collaboratively with a CARRA member who serves as PI. Both the PI and the PL will be cc’d on all correspondence related to this request. 

We will also ask you to identify if these roles are filled by an Early Investigator.

An EARLY INVESTIGATOR (abbreviated EI) is a New Investigator who has completed their terminal research degree or end of post-graduate clinical training, whichever is later, within the past 10 years and who has not previously competed successfully as a PI for a substantial NIH independent research award.
Requestor Information
Principal Investigator (PI) Information
Any information you input will be securely stored within this form for future reference and can be edited as needed in the member portal.
Project Lead Information


       You have the option to include up to three additional investigators. Please consider adding additional investigators if they will be actively working with the requested data or are designated to receive a portion of the requested biosamples. Please note that the authorship plan will be requested separately (no need to list all authors here).

Additional Investigator
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Study Details
ABC Grant Details
Data Count Request Details
Request Details


Data Request Details
Please review the information below and provide more detailed specifications related to this data request.
A de-identified data set contains no personal identifiers, while a limited data set contains some personal identifiers. A de-identified data set may provide age in years, but will not include dates.

Patient IDs will be obfuscated, which will allow you to connect patients across files, eliminating the need to include patient names. Please review the table below to help you identify which type of data set to request.
Data Examples
ZIP Codes (Note: you need to provide an appropriate IRB approval letter if you request full zipcodes. 5 digit zip codes require a limited data set.)

Sample Request Detail

Please provide more detailed specifications related to this sample request. If the request is approved, further details including shipping addresses, patient global IDs, and other information will be requested through a Sample Order Form which will be submitted to the CARRA Biobank.

Sample Types
Type Estimated quantity/volume (units) Justification Person to Receive Samples
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Please specify sample type Estimated quantity/volume (units) Justification Person to Receive Samples
Other Sample Types
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(age, sex, ethnicity)
Regulatory Approvals and Attachments
 Please attach IRB/REB approval and other relevant materials. 
  • IRB approvals from each institution that will receive/analyze data are required. Please scan all IRB approvals into one document before uploading. If your project does not require IRB approval, please provide your IRB exemption letter.
  • If a LOS was requested, please include a draft letter which CARRA will review and format on letterhead if approved
  • You may choose to upload additional supporting materials. These materials can include, but are not limited to, additional investigator biosketches, study protocols, project timelines, related publications, or any other documents you believe would be valuable for our reviewers to consider during the application review process.
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Questions? Contact research@carragroup.org