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EUCCONET International Workshop Bergen, 15th – 17th June 2011 Arild Sunde

MoBa Generation Linkage. EUCCONET International Workshop Bergen, 15th – 17th June 2011 Arild Sunde. Outline. The MoBa Data Linkages we do Generation linkage. Questionnaires. Biological Material. Full blood EDTA Plasma EDTA RNA (child) DNA Urine (mother week 18).

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EUCCONET International Workshop Bergen, 15th – 17th June 2011 Arild Sunde

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  1. MoBa Generation Linkage EUCCONET International Workshop Bergen, 15th – 17th June 2011 Arild Sunde

  2. Outline • The MoBa Data • Linkages we do • Generation linkage

  3. Questionnaires

  4. Biological Material • Full blood EDTA • Plasma EDTA • RNA (child) • DNA • Urine (mother week 18)

  5. MoBaStudy - Generic logistics and LIMS system

  6. MoBaData – Generic questionnaire data management system

  7. Linkage key - SSN • Since 1964 every citizen of Norway has a unique Social Security number DDMMYY##### • Also available to temporary residents, work permit holders etc. • XML message sent from hospital after birth • Used for all records; bank, school, insurance, hospitals etc.

  8. Norwegian Population Registry-DSF • SSN, and history • Mother’s and father’s SSN • Date of birth • Name, and history • Maiden name • Address, and history • Address code • Maritial status • Live status

  9. Keep track of individuals • Mother’s SSN from hospital ultra sound lists • Father’s SSN from consent form • Child’s name from linkage to DSF and Medical Birth Registry-MFR • Mothers and fathers SSN • Expected date of birth -160, +30 days • Monthly updates from DSF • Store changes of all fields in our database

  10. Linkages • Routine link for quality control and updates • DSF, MFR • Included in the consent • MFR located here • Local copy of DSF • Project specific linkages • Researchers order MoBa Data linked to their data or other registries • Requiresapplication to the Regional Ethical committee • Information letter must be sent to participants

  11. Ways we link to other registries • We receive data with SSN. Link and add MoBa data. • We send our participant’s SSN with an ID and get back data for the participants and add MoBa data • We send our participant’s SSN with an ID to a registry. The registry identifies the candidates. The registry and we send data for the candidates with the same ID to the researcher • Each data source pseudonymised before linkage • A third party does the linkage. • Direct access to the data for linkage • Data sent to researchers is always deidentified or anonymized

  12. National Population Registry Medical Birth Registry National Twin Registry Norwegian Patient Registry Cause of Death Registry Norwegian Prescription Database Norwegian Cancer Registry MIDIA NewGeneris And many more...

  13. Generation linkage • MoBa–Norwegian Mother and Child Cohort • 100000 participating pregnancies • 11+ questionnaires, avg. 16 pages • 20000 variables • Biological material (Blood, DNA,RNA,plasma,Urin) • MBR-Norwegian Medical Birth registry • Started 1967 • Information about mother’s health before and during pregnancy, smoking, use of folic acid, occupation, use of medication, diabetes, epilepsy, information on the birth, procedures and information on the child • Mother, father and child’s unique SSN

  14. Aim • Affects of previous generation’s and siblings sicknesses • Affects of heredity and environment What is linked • All MoBa participants’ questionnaires and MBR record are linked to all siblings MBR record, and each of the parents MBR records.

  15. Gives us health information about: • MoBa children • Both parents • Grandparents • Full and half siblings Consent and reservation • Linkage of participant to MBR is included in the MoBa consent form • Linkage to siblings and parents required application to the Regional Ethical committee • Written information had to be sent to all participants • Option for reservation against the linkage (total of 35) • Data anonymized after linkage

  16. Deterministic linkage • Both MoBa and MBR contains SSN of the child, mother and father (if available) • The National Population Registry used for cross checks • Requires 100% match on SSN

  17. Results • 108255 participating children with MBR birth record • 77683 mothers with MBR birth records • 68424 fathers with MBR birthrecords • 84682 non participating siblings from mother • 14718 non participating siblings from father • 12585 mothers with no MBR birth record • 21361fathers with no MBR birth record

  18. Each person was given a role: • Child: Participating child • Mother: Mother of a participating child • Father:Father of a participating child • Sibling: Sibling of a participating child

  19. Roles

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