1. Update from the I4C International Data Coordinating Centre Gabriella Tikellis (PhD) Murdoch Childrens Research Institute 6 th International I4C Meeting, IARC 5-6 th October, 2013

2. CPP - USA 60,000 JPS - Israel 92,408 ALSPAC - UK 14,042 TIHS 10,627 DNBC - Denmark 101,042 MoBa - Norway 109,981 BDSS - China 247,831 JECS - Japan 100,000 NCS - USA 100,000 CFCS – China 300,000 CIHS - Brazil 100,000 BCS - UK 100,000 GEHBC – Germany 200,000 MCRI - VIC 100,000 Wuhan - China 120,000 ELFE – France 20,000 Bradford - UK 10,000 NINFEA – Italy 7,500 I4C member cohorts Murdoch Childrens Research Institute I4C International Data Coordinating Centre

4. Role of the IDCC

5. Coordinate the transfer of cohort data to a central location (i.e. MCRI) Maintain and ensure the data is kept secure In collaboration with cohort representatives, work on the cleaning, validation and harmonization of variables from each dataset Develop pooled datasets for analysis Provide statistical support where required Work with cohorts, Working Groups and other members to assist and facilitate the various research and day-to-day activities Provide scientific input into the development of research proposals I4C draft policies_March2013

6. Welcome to our Biostatisticians Prof Stanley Lemeshow Dr Gary Phillips Center for Biostatistics

7. Childhood cancer cases

8. Total number of cancer cases at I4C IDCC: Oct 2013 based on all live births (545) MoBa: Results from latest linkage to cancer registry in May 2013, found 127 cases of CC. Awaiting details on cancer types to be made available to IDCC

9. Progress in last 12 months Ascertainment of follow-up years for each child Established age of child at last contact time - for cancer cases and non-cancer subjects across 6 cohorts  Significant amount of work carried out to determine amount of follow up for each subject  Communication with cohorts to establish dates of linkage with cancer registries or last dates of contact

10. Transfer of questionnaire data

11. 6 cohorts contributing data to the pooled dataset ALSPAC, UK CPP, USA DNBC, Denmark, JPS, Israel MoBa, Norway TIHS, Australia

12. Tally of available data at IDCC 380,427- mothers and babies* * Includes 10% subsample from DNBC and MoBa

13. Pooled variables provide a ‘core’ dataset which we have used to examine birth weight and childhood cancer association

14. Pooled dataset- Birth weight X = data not collected ? = to be verified Not all variables included in final models, Variables included were focused on prenatal time period

15. Birth-related variables VARIABLEALSPACCPPDNBCJPSMoBaTIHS Gestation age, weeks √√√√√√ Birth weight, grams √√√√√√ Placental weight, grams √√√ X √√ Gender of index child √√√√√√ Caeserean section delivery √√√√√√ Length at birth, cm √√√ X √√ Head circumference at birth, cm √√√√√√ Congential abnormality √√√√√√ Breastfeeding √√√X?√ First born √√√√√√ X = data not collected

16. Focus on additional variables X = data not collected ? = still being worked on Cleaning and harmonizing of data on previous fetal loss required over 4 months of work to verify data and document the decisions made

17. Core Dataset e.g. History of previous fetal loss New pooled dataset New exposure data

18. Next steps Incorporate additional cases of CC from updated linkages to cancer registries (e.g. MoBa) or new cohorts Create new datasets for analysis of other hypotheses to be examined :  Parity and birth order  Previous fetal loss  Parental age Identify what data is available on exposures relating to new areas of interest such as infections

19. Web-based Data Pooling Application at IDCC (developed by Luke Stevens)

20. Data Pooling Application MCRI’s secure e-Research portal Restricted access I4C team only Can restrict user access at dataset level Ongoing development

21. Data Pooling Application Run a query Select variables to download Select from any dataset Database joins the datasets returning a combined data file

22. Data Pooling Application Select variables to download Select from any dataset Database joins the datasets returning a combined data file

23. Data Pooling Application Edit or Save your query Download –Raw data file

24. Information on I4C NIH/NCI- I4C portal https://communities.nci.nih.gov/i4c/default.aspx MCRI- website http://www.mcri.edu.au/research/international-partnerships- collaborations/i4c National Children’s Study website http://www.nationalchildrensstudy.gov/research/internationalin volvement/pages/default.aspx

25. Many thanks to... MCRI  Terry Dwyer  Luke Stevens  Karen Lamb ALSPAC  Jean Golding  Kate Northstone CPP  Mark Klebanoff  Logan Spector NIH/NCI  Martha Linet  Somdat Mahabir DNBC  Sjurdur Olsen  Jorn Olsen  Marin Ström  Charlotta Granström JPS  Ora Paltiel  Elena Polanker MoBa  Camilla Stoltenberg  Siri Eldevik Håberg  Therese Bakke