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Organization and Communication: The Womens Environment, Cancer and Radiation Epidemiology (WECARE) Study Jonine Bernstein, Ph.D.

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Presentation on theme: "Organization and Communication: The Womens Environment, Cancer and Radiation Epidemiology (WECARE) Study Jonine Bernstein, Ph.D."— Presentation transcript:

1 Organization and Communication: The Womens Environment, Cancer and Radiation Epidemiology (WECARE) Study Jonine Bernstein, Ph.D.

2 WECARE Study Overview Purpose To examine the interaction of radiation exposure and genetic susceptibility in the etiology of second primary breast cancer. Hypothesis A woman who carries a mutant variant in one of the genes under study will be more susceptible to radiation-induced cancer than a woman who is not a carrier. Design Population-based, case-control study –Cases are women with bilateral breast cancer –Controls are women with unilateral breast cancer (Bernstein, …, Thompson, Br Ca Res 2004)

3 Data Sources

4 WECARE Study Design Cases (n=708) Diagnosed since 1/1/1985 with incident breast cancer Diagnosed since 1/1/1986 with contralateral breast cancer One year or longer time lag between primaries Under age 55 at diagnosis of the first primary No other cancer diagnosis Alive

5 WECARE Study Design Controls (n=1397) With unilateral breast cancer Individually matched 2:1 to cases on: –Registry –Age (5 year) –Diagnosis date of breast cancer (4 year) –Race No other cancer diagnosis Counter-matched on radiotherapy status –2:1 (RRT+: RRT -)

6 WECARE Study Data Collection Women identified through 5 population- based cancer registries (US and Denmark) Telephone interview using a structured questionnaire During home visits, a blood sample drawn by a study phlebotomist

7 Medical Treatment Information and Data for Radiation Dosimetry Sources –Treatment and tumor characteristics information collected registry records –Hospital charts –Pathology/surgery reports –Doctor office /mammography records –Radiation oncology files Missing Data –~ 7% patient records inadequate for dosimetry –~ 2% participants have all documentation missing

8 Contralateral Breast Dose (cGy): Mean and Range among Patients Treated with Breast Irradiation (1488 patients)

9 Laboratory Screening Genetic Analyses –Conducted in 5 labs for all 2100 WECARE Study participants (US, Norway, and Sweden) –Staged approach: DHPLC followed by direct sequencing –All conditions, primers standardized across labs –Inter- and Intra-lab QC implemented (Bernstein, …, Concannon, Hum Mut 2003)

10 WECARE Study Organization

11 Coriell DCS USC MSKCC DCS SEER Sites USC FHCRC UCI IOWA BRI NRH USC LUND UCLA MSSM UTMDACC VU NYU USC MSKCC USM WECARE Study Working Groups: Field Organization Laboratories Data Collection Centers Coordinating Center Epidemiological/ Biostatistical Methods Radiation Dosimetry Cell Line Prep/Biorepository External Advisory Committee NCI Program Officer Data Management MSKCC Internal Advisory

12 WECARE Study Working Subcommittees Data & Biorepository Use Rotating Membership Publications Rotating Membership Allocation of Specimens and Lab Protocol Review Fixed Membership Steering Committee All PIs and Key Investigators Internal Advisory Fixed Membership Data Analysis Centrally Coordinated/All invited Budget Fixed Membership Derived Variables Centrally Coordinated/ All Invited

13 WECARE Study Collaborative Group Coordinating Center Jonine Bernstein MSKCC Xiaolin Liang MSKCC Abigail Wolitzer MSKCC Internal Advisors Leslie Bernstein Robert Haile Pat Conconnan WD Thompson Data Collection Leslie Bernstein USC Laura Donnelly USC Valerie Zayas USC Kathy LaneUSC Jane Sullivan-HalleyUSC Jorgen Olsen DCS Lene MellemkjaerDCS Helle Clement PetersenDCS Lisbeth BertelsenDCS Michael AnderssonDCS Kathleen Malone FHCRC Noemi EpsteinFHCRC Heather JuradoFHCRC Hoda Anton-CulverUCI Joan LargentUCI Kay BergdahlUCI Chuck LynchIowa Jeanne DeWallIowa Lori OdleIowa Methods Duncan ThomasUSC W. Douglas ThompsonUSM Bryan LangholzUSC Xinbo ZhangUSC Yaping WangUSC Colin BeggMSKCC Marinela CapanuMSKCC Amanda HummerMSKCC Laboratory Pat ConcannonBRI Sharon TeraokaBRI Eric OlsonBRI Robert HaileUSC Anh DiepUSC Yong LiuUSC Nianmin ZhouUSC Shanyan XueUSC Andre HernandezUSC Evgenia Ter-KarapetovaUSC Anne-Lise Borresen-DaleNRH Laila JasenNRH Olaug RodningenNRH Ake BorgLund Therese SandbergLund Lina JohanssonLund Barry RosensteinMSSM David AtencioMSSM Per GuldbergDCS Radiation Dosimetry Marilyn StovallMDAAC Susan SmithMDACC Roy ShoreNYU Repository Jeanne BeckCoriell Rick MartinasCoriell Anh DiepUSC Yong LiuUSC Irene Orlow MSKCC Consultants Richard GattiUCLA Elaine OstranderNIH John Boice, Jr.VU External Advisors Alice WhittemoreStanford Jack SchullUTH Bruce PonderCambridge Program Officer Daniela SeminaraNCI

14 WECARE Study Communication

15 Communication Through-out Study Working Group Communication during field work- Constant –Within Group Bi-monthly conference calls Monthly data delivery and progress reports Dedicated web-site –Between Group Annual/ semi-annual key investigator meetings

16 Central Informatics Management System Functional domains –Tracking database – every phase and every aspect of study on individual level and triplet level –Database for storage, cleaning and maintain data acquired through data collection instruments –Mutation screening database – screening process and results –Long term storage and access –Secures confidentiality CIMS links and maintains data from all sources and tracks all information so it is instantly available.

17 Tracking database -Data Collection

18 Production Report 1

19 WECARE Study Informatics




23 Summary: Challenges Study set up is key– anticipate the type of informatics that will be needed and plan ahead; Involve trained personnel, including informatics specialists, data managers and editors (for both lab and epi data); Over-communicate throughout the study, especially if the study involves scientists from diverse geographic regions; Plan in advance to maintain the infrastructure, even as the study is winding down.

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