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Clinicians & Researchers

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Request for Data

Any publication, including abstracts, using ATN Registry and/or AIR-P research data must be reviewed by the Network Scientific Review Committee PRIOR to submission to the journal/conference. Reviews typically take 3–4 weeks, so please plan for deadlines. Please submit materials to Brian Winklosky at bwinklosky@mgh.harvard.edu.

A Request for Data (RFD) is the mechanism by which an individual may submit a formal request to generate analyses from the AS ATN Registry. Once the online RFD form and all supporting documents are complete, the submission will be electronically routed to the MGH Clinical Coordinating Center (CCC) and Autism Speaks for review and approval. Upon approval, the MGH Data Coordinating Center (DCC) — the MGH Biostatistics Center — will conduct any necessary follow-up and provide the appropriate ouput/analyses. In general, analyses generated from an approved request may take 2–4 weeks from the date of submission.

IMPORTANT: In order to avoid delays for other investigators who may be interested in similar data, you will have 30 calendar days from the date of your RFD approval to demonstrate that you are actively working on the analyses. The Clinical Coordinating Center team will prompt you at that time to determine the status of your RFD activity. If it is determined to be INACTIVE, we will consider your RFD closed.

In the case of a raw data request, please be sure to include/upload the required documentation: 1) detailed analytic plan; 2) IRB approval; 3) CV for statistician conducting the work.

Prerequisites

  • If you have not already done so within the 12-month period, you must read the ATN Researcher Distribution Agreement (RDA) and attest that you understand and agree to the terms therein before you will be allowed to proceed. You may access the RDA along with instructions on how to sign off here.
  • Please contact Angie Fedele at afedele@autismspeaks.org if you have questions about the RDA or need to make changes to meet your institutions requirements.

Create & Manage Requests

Create new request for data »

Some data is already available to the public. Before submitting a request, be sure to check out:

List of available assessments

You can see a list of the available assessments.

Notes

  • Upon submission, your request will be routed to Brian Winklosky, Angie Fedele, Audrey Wolfe, and the Data Coordinating Center statisticians.
  • The average turnaround time for the RFD submission depends on the complexity of requested analysis and whether there is any request for raw data. The CCC and/or DCC staff may contact you with initial screening and follow-up questions prior to providing any requested data. Please plan accordingly when reporting your target publish date.
  • To view the statuses of your requests, simply revisit this page (make sure you are logged in). A list of all your requests should appear in a table below.

Find My Requests

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