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Clinicians & Researchers

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Request for Data

The Autism Treatment Network (ATN) has developed a streamlined approach to provide access to data from the Registry and Registry Call-Back Assessment (RCBA) studies for qualified investigators, internal or external to the ATN. The deidentified data for each project is provided as a single compressed file, with documentation of all the data included for the project.

A Request for data (RFD) is the mechanism by which an individual may submit a formal request to obtain data from the AS-ATN Registry or the AS-ATN Registry Call-Back Study. To request data, an investigator should provide the following documentation:

  1. A brief (one-page) statement or abstract for the use of data in Autism research, which must include a minimum of one specific aim and a related hypothesis for the project. (A .txt, .pdf, or Microsoft Word file.)
  2. An IRB approval or waiver for the project. (A .pdf file.)
  3. An NIH biosketch (or an equivalent) demonstrating that the investigator either is established in, or in a formal training program to become established in, Autism research or an appropriate related field. (A .txt, .pdf, or Microsoft Word file.)

In addition, the requester must agree to the ATN Researcher Distribution Agreement (RDA) and the Network Publications Policy. You will be asked to attest that you understand and agree to the terms of these agreements before you can proceed.

Please contact Angie Fedele at afedele@autismspeaks.org if you have any questions about the RDA or publication policy, or need to make changes to meet your institution's requirements.

Note that depending on your institution or proposal, there may be further agreements needed such as a data use agreement.

Within 10 business days of receipt, the AS-ATN Clinical Coordinating Center (CCC), as well as one member of the ATN/AIR-P leadership team, will review the materials submitted to ensure that:

  1. the proposed data use is for a reasonable project in Autism,
  2. the research has IRB approval or a waiver,
  3. that the investigator receiving the data is either established in Autism research or a related field, or is in an appropriate training program, and
  4. that the RDA and Network Publication Policy requirements, and any necessary data use agreement requirements, have been met.

Once approved, the CCC will instruct the AS-ATN Data Coordinating Center (DCC) to provide the requested dataset(s) to the investigator. The data will be transferred using the Partners Secure File Transfer facility. Instructions for the use of this system will be sent to the external investigator by the DCC after CCC approval.

We provide these deidentified datasets to encourage autism researchers to make use of the data. We welcome technical questions about issues of accessing the data sets provided, but cannot assist with questions relating to interpretation of the data. Some documentation is provided about the various scales and measures included in the dataset.