||3U01CA167551-07S1 Interpret this number
||University Of Melbourne
||Data Sharing: the Colon Cancer Family Registry Cohort
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.
None. See parent grant details.