The Colon Cancer Family Registry Cohort (CCFRC) has served as an international resource for studies of the genetics and epidemiology of colorectal cancer since 1997. It comprises approximately 37,000 subjects from 10,800 families recruited between 1998 and 2013 from the USA, Canada, Australia and New Zealand. In an effort to enhance access to CCFRC data to the scientific community, we will submit CCFRC data to NIH?s Database of Genotypes and Phenotypes (dbGaP). Datasets will be linkable via an individual dbGaP_ID number. The funds requested in this administrative supplement will support needed additional database staff required to develop this pipeline, and to submit the individual-level incident cancer and observation time data to dbGaP, thereby allowing us to expand the accessibility of the CCFRC resource to an even greater extent. In this administrative supplement application, we seek funding to support the submission of individual- level data to dbGaP. Funds are requested for CFR site staff to work with the Informatics Center for the CCFRC to perform the following aims: Creating a high-quality pipeline for future submissions of CCFRC data to dbGaP: Writing a series of database programs to create data dictionaries and related dataset documentation for the large number of variables to be submitted from questionnaire data including: conversion of fields to meet dbGaP requirements, including privacy; performing error checks to identify missing and erroneous data; and annotating variables as required by CCFRC IRB/Ethics boards to ensure subject privacy is protected including assigning new dbGaP ids; [Note:
This aim would not have been done for the depositing of previously contracted submissions (the baseline data and the most recent follow-up data). It is required here to streamline the process for the incident cancers and observation time (Aim 3 of this application) and for future data submissions to ensure the highest possible quality and annotation thereby maximising the usefulness of the submitted data]. Supplement Aim 2: Registration of incident cancer data and observation time with dbGaP: Register the data submission; obtaining IRB/Ethics approval for the submission and Institutional Certificates; developing CCFRC-site-specific (if necessary) or CCFRC-wide dbGaP application materials for incident cancer data and years of observation; Supplement Aim 3: Submission of incident cancer data and years of observation to dbGaP: Uploading incident cancer data and observation time to dbGaP (note: the submission of baseline questionnaire data and new follow-up questionnaire data is not part of this application); reconciliation of submitted incident cancer data and observation time data.
The Colon Cancer Family Registry Cohort is well established and has been the resource of many studies of colorectal cancer. If this supplement is funded, it will enhance the accessibility of the cohort data via a publicly accessible database.
