Introduction - informatics

							Breast and Colon Cancer
Family Registry Technical
Working Group Meeting

Introduction

Baris E. Suzek, M.S.
Peter McGarvey, Ph.D.
4/26/2010
Outline

• Introductions

• Annual Update (Since July, 2009)

• Future Plan
Mission and Goal

•   Mission...
     – The Technical Working Group (TWG) is chartered to ensure the quality,
        accuracy, completeness and timeliness of data collection and
        distribution of the Breast and Colon Cancer Family Registry (BC-CFR)
        data for research.

•   Goals...
     – Develop (or improve) processes to ensure quality, accuracy, completeness
       and timeliness of data submissions to Informatics Support Center (ISC) by
       Breast and Colon Cancer Family Registries (BC-CFR)
     – Develop (or improve) processes to ensure quality, accuracy, completeness
       and timeliness of data that is distributed by Informatics Support Center
       (ISC) in response to researcher requests
     – Develop mechanisms to check consistency of data between ISC and BC-
       CFRs with future goal of currentness of data at the ISC
     – Facilitate creation of new data dictionaries/modules to handle more data
       types in response to emerging needs of community
     – Update existing data dictionaries to ensure accuracy, coverage and
       descriptiveness in response to community request
     – Ensure integration of existing data standards where possible and
       appropriate (e.g., terminologies/vocabularies)
Improving WG Communication

• TWG Wiki pages for proposals/meeting
  notes/SOPs:
   – https://informatics.lombardi.georgetown.edu/di
     splay/bccfr/TWG+-+Technical+WorkGroup


• Email list:
   – bccfr_twg-l@georgetown.edu


• Biweekly and/or ad-hoc meetings
 Data Dictionary Proposal Development
 Process
               – Background is presented to TWG by proposal
                 developers
  Initiation   – Proposal developers can be TWG or other working
                 group members

               – Developers develop and format their proposal using
Development      TWG proposal templates
               – Presented to relevant WGs (e.g., Biospecimen WG)

               – Proposal is submitted to TWG for review via email
                 and/or posted on TWG web site. TWG members
 WG Review       comment as needed and comments are addressed by
                 developers.

               – Decide on implementation time
WG Approval    – Approve proposal (or decide on mechanism to approve
                 such as Doodle Polls)
               – Decide whether Steering Committees approvals are
                 needed
  Steering
               – Final proposal is submitted to Steering Committees, if
 Committee       needed
  Approval
Data Dictionary Proposal Templates
                      Word for Single Data
                      Elements




Excel for
Modules/Tables
Proposals Approved/Released

• Current data dictionary proposals based
  on:
  – New data (e.g. Epi Follow-up)
  – Immediate needs related to submissions (e.g.
    Sub Centers)


• 21 Data Dictionaries Approved/Released
  – https://informatics.lombardi.georgetown.edu/di
    splay/bccfr/Released+-+Approved
Proposals Under Development

• 33 Under Development
  – ~20 at final stages
  – Some fairly large data dictionary module/table
    proposals including:
     • Colon Epi 1st and 2nd Follow-up (Will be reviewed
       today)
     • Breast Epi Follow-up (Final review today)
     • Biospecimen (Will be reviewed today)
Better, Faster, Lighter Validators

 Conversion       • An effort to improve data
                    validation and edit checks
           PASS
                    – Erin Hedlund, ISC database
Required (y/n)        lead, provided training on
                      ISC data validation process
           PASS




                    – ISC Database team actively
Field Checks          reviews the edit checks for
                      proposals
           PASS




Inter-X Checks
Improving Data Quality

• For new proposals edit checks are included

• For old/legacy data dictionaries edit checks are
  added retroactively in coordination with relevant
  BCCFR WGs:
   – Completed:
      • Breast Epi Baseline Edit Checks
      • Colon Epi Baseline Edit Checks - Bowel screening and
        health

   – Ongoing:
      • Colon Epi Baseline Edit Checks (e.g. Medications,
        Physical activity, Smoking)
Future Plan

• Improve/add edit checks to more modules
  such as
  – Family History
• Continue to develop proposals for data
  dictionaries such as:
  – Colon Epi Follow-up Module
  – Molecular Module
• Improve approval process such as:
  – Data Dictionary Development Proposal
Questions
Meeting Agenda
Meeting Logistics
•   For general meeting and Breast Cancer Parallel Session (Room
    1300):

    https://webmeeting.nih.gov/bccfrtwg1/

    Phone:
          1-800-658-754 - Australia
          1-866-692-4538 - Canada, USA
    Participant Passcode: 6496193#


•   For Colon Parallel Session (TBD):

    https://webmeeting.nih.gov/bccfrtwg2/

    Phone:
          1-800-993-915 - Australia
          1-866-692-3158 - Canada, USA
    Participant Passcode: 3761046#