Swedish Twin Registry

STR
Swedish Twin Registry

ki.se/en/research/the-wedish-twin-registry
[email protected]
Multiple funders
Multiple funders

Data collection ongoing| Data analysis ongoing

Swedish

Sweden

Primary Samples: Stabilised samples (frozen or fixed)| Secondary samples:(derivatives of primary samples)| Secondary samples: DNA

No

ki.se/sites/default/files/publikationer2_str.pdf

questionnaires, health and cognitive assessments, biological measures

No

Age

Yes – funding applied for/funding awarded

Neurodegenerative disease in general

Data is held as individual records
No
Data held on computer based records
No
Yes
Apply to PI or co-ordinator at resource| Access independent of collaboration with PI| Access committee mechanism| Local/ regional access| National access| International access| Access to industry| Access for pilot studies permitted| Applicant needs to provide separate external ethics approval| Other criteria (Must be in collaboration with a Swedish co-investigator
No requirement to make data publicly available
Yes

Yes
To provide a national, population based resource for the study of genetic and environmental influences on behavior and disease.
It is large, covers the entire country of Sweden, and is genetically informative (twins).
1000+
Nancy Pedersen & Margaret Gatz, Karolinska Institutet and University of Southern California, The Study of Dementia in Swedish Twins (HARMONY)| Nancy Pedersen, Karolinska Institutet, Parkinson’s Disease in Swedish Twins

More than 15,000 participants
disorder relevant assessments
Prospective cohort| Longitudinal| Nested case-control within cohort
data also collected through the study and links to medical records

No

01/01/1961

Data collection ongoing| Data analysis ongoing
Through links to other records or registers (e.g dental records, police records etc)

Data summarised in database

No
No
No
Swedish Twin Registry
Already possible

Population Cohorts
Sweden
Neurodegenerative disease in general
2016