Transcript Slide 1

MoBa Generation Linkage
EUCCONET International Workshop
Bergen, 15th – 17th June 2011
Arild Sunde
Outline
• The MoBa Data
• Linkages we do
• Generation linkage
Questionnaires
Questionnaires
Responses
Q1 (17 weeks)
101.600
Q2 (22 weeks)
96.700
Q3 (30 weeks)
94.300
Q4 (6 months)
89.700
Q5 (18 months)
66.800
Q6 (3 years)
51.400
Q5 (5 years)
14.700
Q7 (7 years)
14.200
Q8 (8 years)
3.300
Q Father (17 weeks)
76.700
MoBaFlu
15.000
Biological Material
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Full blood EDTA
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Plasma EDTA
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RNA (child)
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DNA
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Urine (mother week 18)
Sample type
Count
K11-Blood from pregnant woman, week 18
17.509
K12-Blood + Urine from pregnant woman, week 18
81.872
K2-Blood from mother after birth
86.442
M-Blood from father, week 18 in pregnancy
73.314
B- Cord blood from newly born child
92.612
Others: A, KA, MA, W23, W29
2.239
MoBaStudy - Generic logistics and LIMS system
 Participant administration
 Questionnaire dispatchments based on user defined rules
 Sample management
 Sample retrieval
 Communicates with laboratory robots
 Reports
 Dynamic letters (Merge letters defined by users)
 Standard reports
 User defined reports
 All user interface labels, menus and messages
are defined in the database
 User rights (visibility, update access) to all interface
components are defined in the database
 Change/audit log for all database fields
 Code 128 Barcode labels for questionnaires, sample tubes,
racks, shelves and freezers
 MSSQLServer 2005 database
 Client application developed in VisualStudio 2005 (.NET/C#)
 PDA version for Sample retrievals – PDALab
 From 2011: Communication with RTS A4 Sample-Store™
 Dual language support
 Used by 3 independent studies as of September 2010
 Easy setup for new studies
MoBaData – Generic questionnaire data management system
 Maintains data and metadata for all questionnaires
 Reports
 Linked to MoBaStudy participants by barcode
 Define, test and modify quality control rules
 Automatically create storage tables based on
 View questionnaire images and compare to data
Readsoft Eyes & Hands ™ description files
 View scanned data by marking a field on the image file
 Automatically create storage tables based on a data files
 Data extraction (shopping list)
 Track questionnaire versions and linking between versions
 Create SAS and SPSS data files with metadata (variable- and
 Loading data files while controlling record and field structure
according to questionnaire definition
value labels)
 Tracks data changes
 Meta data in two languages
 Oracle 11 database
 Quality control
 Client application developed in Visual Studio 2005 (.NET/C#)
 User rights
 Easy setup for new studies
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.
Norwegian Population Registry-DSF
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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
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
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
• Requires application to the Regional Ethical
committee
• Information letter must be sent to participants
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
• 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...
Generation linkage
• MoBa–Norwegian Mother and Child Cohort
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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
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.
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
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
Results
• 108255 participating children with MBR birth
record
• 77683 mothers with MBR birth records
• 68424 fathers with MBR birth records
• 84682 non participating siblings from mother
• 14718 non participating siblings from father
• 12585 mothers with no MBR birth record
• 21361 fathers with no MBR birth record
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
Roles
Role
Count
Child
73174
Mother
90007
Father
89636
Sibling
99356
Child/Sibling
35037
Mother/Sibling
222
Father/Sibling
110
2
Mother/Father