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Data submission, use, and access

The Cerebrovascular Disease Knowledge Portal will (a) serve as the gateway to a large and growing aggregation of data relevant to the genetics of cerebrovascular disease and its complications; (b) automate analyses required to interpret those data; and (c) provide a customizable workspace for permitted investigators who wish to perform analyses not otherwise available on the Portal.

The Broad Institute and Massachusetts General Hospital will aggregate data, support analyses, and continue to update capabilities to disseminate results relevant to the genetics of cerebrovascular disease and related traits, while coordinating collaboration within the Portal.

Individual-level data will never be shared with Portal users. Individual-level data will reside in one or several data vaults behind a secure firewall. User-activated modules will be deployed behind the firewall to analyze the data or query precomputed results. The purpose of the Portal is to enable broad access to genetic information concerning cerebrovascular disease in a form that meets user needs while maintaining individual privacy requirements. Portal users are encouraged to provide feedback on the extent to which the Portal meets those goals.

Data Deposition and Data Transfer Agreements

Investigators who wish to deposit data into the Portal are encouraged to do so. Documents required for data deposition into the Portal:

Portal Access and Terms of Conduct

User registration

To access the Portal, users must obtain a Google ID, which will be used for quality control and monitoring purposes.

Data use and availability

All users are welcome to use results from analyses of these data to further their research without seeking explicit permission from the Portal team or funders.

User Responsibilities

Portal users are expected to abide by the following provisions on data use:

  1. Users will not attempt to download any dataset in bulk from the Portal
  2. Users will not attempt to identify or contact research participants
  3. Users will protect data confidentiality
  4. Users will not share any of the data with unauthorized users
  5. Users will report any inadvertent data release, security breach, or other data management incidents of which they become aware
  6. Users will abide by all applicable laws and regulations for handling genomic data
  7. Users will not submit a manuscript for publication until the Early Access Period is over (6 months after the clean dataset becomes available in the Portal), to allow for beta testing on the integrity of the dataset and finalization of the results on the Portal.

Agreeing to these provisions is a requirement of Portal use. Violating them may result in an NIH investigation and sanctions including revocation of access to the Portal.

Citing portal data

Users are also welcome to cite the data in scientific publications, provided that they cite the Portal as the source. If users are citing a single dataset represented in the Portal, they should cite both the Portal and the relevant paper for that dataset.

Please use the following citation when referring to data accessed via this portal:

Cerebrovascular Disease Knowledge Portal, NINDS grant # 1R24NS092983. Year Month Date of access; URL of page you are citing.

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