The PCGC considers a request for phenotype data from the PCGC as limited if it meets the following criteria:<\/p>\n

\n
• Patient re-contact is not required,<\/li>\n
• Data are limited to \u2264 10 patients, if data already exists in HeartSmart, or<\/li>\n
• Data are limited to \u2264 5 patients, if data exists in the medical record<\/li>\n<\/ul>\n

  To streamline the process for obtaining these data from the PCGC, an external investigator should submit a request by email to B2BProgram@cchmc.org<\/a>. 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<\/a> who will inform the requestor about what type of data are available and provide guidance through the process as needed.<\/p>\n

  The PCGC Ancillary Study Committee will review the request to ensure that the proposed request for data on unpublished probands does not overlap with ongoing PCGC work.<\/p>\n

  The PCGC Administrative Coordinating Center (ACC) will notify the requestor of the committee\u2019s decision to approve the request. If approved, the external investigator must agree to:<\/p>\n

  \n
  • Appropriate acknowledgment of the PCGC in any possible publications involving PCGC patients\/data.<\/li>\n
  • Include as an author on publications that involve PCGC patients\/data any PCGC collaborators that engaged in sufficient activities to warrant authorship.<\/li>\n<\/ul>\n

    The ACC will provide the external investigator with an acknowledgement statement template that includes grant numbers to be inserted into publications.<\/p>\n

    If a request is disapproved, the ACC will notify the external investigator by email with an explanation for why it was disapproved.<\/p>\n","protected":false},"excerpt":{"rendered":"

    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 \u2264 10 patients, if data already exists in HeartSmart, or Data are limited to \u2264 5 patients, if data exists in the medical record To streamline the … Continue reading “Requests for Limited Data”<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"parent":129,"menu_order":7,"comment_status":"closed","ping_status":"closed","template":"","meta":[],"_links":{"self":[{"href":"https:\/\/benchtobassinet.com\/index.php?rest_route=\/wp\/v2\/pages\/1941"}],"collection":[{"href":"https:\/\/benchtobassinet.com\/index.php?rest_route=\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/benchtobassinet.com\/index.php?rest_route=\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/benchtobassinet.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/benchtobassinet.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=1941"}],"version-history":[{"count":4,"href":"https:\/\/benchtobassinet.com\/index.php?rest_route=\/wp\/v2\/pages\/1941\/revisions"}],"predecessor-version":[{"id":1954,"href":"https:\/\/benchtobassinet.com\/index.php?rest_route=\/wp\/v2\/pages\/1941\/revisions\/1954"}],"up":[{"embeddable":true,"href":"https:\/\/benchtobassinet.com\/index.php?rest_route=\/wp\/v2\/pages\/129"}],"wp:attachment":[{"href":"https:\/\/benchtobassinet.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=1941"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}