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Autism Consortium Research Data Access Request

The Autism Consortium collection of family data and samples is available to qualified PIs and faculty who are studying ASDs. The collection includes de-identified data on family structure, age, sex, clinical status, and diagnosis ("clinical data"), RNA, DNA and cell line cultures ("biomaterials"), and data derived from extensive phenotyping assessments including ADI, ADOS, IQ measures and others (“phenotyping data").

To obtain samples from the Autism Consortium the Principal Investigator (PI) must be a member in good standing of the Autism Consortium and be actively contributing to the mission as outlined in the membership policies for a period of six months before requesting data or samples. The project must also be approved by the Autism Consortium Steering Committee. Researchers not affiliated with the Autism Consortium can obtain Autism Consortium samples and data via the National Institutes of Mental Health repository.

Upon approval by the Steering Committee, researchers are required to read and acknowledge receipt of the Distribution Agreement between the AC and the NIMH governing sample use and data transfer. Importantly, the investigator agrees to provide the Center for Genetic Studies at the NIMH with an electronic copy of all genetic analysis data derived from the biomaterial. Researchers must also sign a statement that they agree not to attempt to recreate any of the copyrighted measures from the individual questions listed in the database.

Further, researchers who request biomaterials are required to submit to the Autism Consortium information on any and all of the genetic analysis data derived from the biomaterials six months after receipt of the biomaterials. The information required includes: the biomaterials used, the type of analyses performed, the AC ID codes of the biomaterials analyzed, and contact information for the principal investigator or a designee who will provide the data upon request. This information will be stored as a field in the Autism Consortium database and the researcher is responsible for sharing that data with any member of the Autism Consortium if it is requested, as outlined in the Autism Consortium data sharing agreement.