The PCGC considers a request for phenotype data from the PCGC as limited if it meets the following criteria:
- Patient re-contact is not required,
- Data are limited to ≤ 10 patients, if data already exists in HeartSmart, or
- Data are limited to ≤ 5 patients, if data exists in the medical record
To streamline the process for obtaining these data from the PCGC, an external investigator should submit a request by email to B2BProgram@cchmc.org. The request should include a description of the project (short paragraph), the type of information requested, and the number of patients involved in the request. An external investigator must work with a PCGC PI who will inform the requestor about what type of data are available and provide guidance through the process as needed.
The PCGC Ancillary Study Committee will review the request to ensure that the proposed request for data on unpublished probands does not overlap with ongoing PCGC work.
The PCGC Administrative Coordinating Center (ACC) will notify the requestor of the committee’s decision to approve the request. If approved, the external investigator must agree to:
- Appropriate acknowledgment of the PCGC in any possible publications involving PCGC patients/data.
- Include as an author on publications that involve PCGC patients/data any PCGC collaborators that engaged in sufficient activities to warrant authorship.
The ACC will provide the external investigator with an acknowledgement statement template that includes grant numbers to be inserted into publications.
If a request is disapproved, the ACC will notify the external investigator by email with an explanation for why it was disapproved.