Title of cohort
Swedish Adoption/Twin Study of Aging
Name of Principal Investigator - Title
Name of Principal Investigator - First name
Name of Principal Investigator - Last name
Address of institution -Institution
Karolinska Institutet, Department of Medical Epidemiology and Biostatistics
Address of institution - Street address
Address of institution - City
Address of institution - Postcode
Q1a. Please indicate below if your cohort includes or expects to include, incidence of the following conditions?
Alzheimer's disease and other dementias
Q1b. When are studies on the above condition(s) expected to become possible?
Q2a. In a single sentence what is the stated aim of the cohort?
A longitudinal program in gerontological genetics (aging)
Q2b. What distinguishes this cohort from other population cohorts?
it is comprised of a sample of elderly twins who were separated at an early age and reared apart, giving unique opportunities to study early environmental effects
Q3a. i) Number of publications that involve use of your cohort to date
Q3a.ii) Please give up to three examples of studies to date (Principal Investigator, Institution, Title of Study)
Nancy Pedersen, Karolinska Institutet, The Study of Dementia in Swedish Twins
Q3b. If data on research outputs are already available please paste the publication list/other data or provide a link to where these data are publicly available
Q3c. If no research has been done as yet, please explain in a few sentences what information (i.e. research findings) you expect will be gained from the population
Q4a. Study criteria: what is the age range of participants at recruitment? Age in years From:
Q4a. Study criteria: what is the age range of participants at recruitment? To:
Q4b. Study criteria: what are the inclusion criteria?
Swedish twins, separated early or matched to that sample
Q4c. Study criteria: what are the exclusion criteria?
Q5. What is the size of the cohort (i.e. how many participants have enrolled)?
Q6a. Please describe what measures are used to characterise participants
health and cognitive examinations, questionnaires
Q6b. Are there additional measures for participants with a clinical disorder?
Q6c. Are there defined primary and secondary endpoints (e.g. defined health parameters)?
Q7. What is the study design (select all that apply)?
Q8. Are your cases matched by
Q9a. Does your study include a specialised subset of control participants?
Q9b. If your study includes a specialised subset of control participants please describe
Q10a. i) Please enter the data collection start date
Q10a. ii) Please enter the data collection end date
Q10a. iii) Is data collection for this study
Q10b. If data collection is ongoing, are there plans to continue the cohort study beyond the current projected end date?
Other please specify here
and through links to medical records
Q12. Is there a system in place to enable re-contact with patients to ask about participation in future studies?
Yes (participants given permission to be re-contacted via PIs)
Q13a. Please give information on the format and availability of data stored in a database (1)
Data summarised in database
Q13a. Please give information on the format and availability of data stored in a database (2)
Q13a. Please give information on the format and availability of data stored in a database (3)
Q13a. Please give information on the format and availability of data stored in a database (4)
Q13b. Please give information on the format and availability of data held as individual records (1)
Data is held as individual records
Q13b. Please give information on the format and availability of data held as individual records (2)
Q13b. Please give information on the format and availability of data held as individual records (3)
Data held on computer based records
Q13b. Please give information on the format and availability of data held as individual records (4)
Please specify language used
Q14a. Is data available to other groups?
Q14b. If data is available to other groups what is the access policy/mechanisms for access?
Apply to PI or co-ordinator at resource| Access independent of collaboration with PI| Access committee mechanism| Local/ regional access| National access| International access| Applicant needs to provide separate external ethics approval
Q15. What data sharing policy is specified as a condition of use?
Q16a. Are tissues/samples/DNA available to other groups?
Q16b i) If yes, please describe below:
Q16b. ii) In what form are tissues/samples/DNA supplied?
Q16b. iii) Is the access policy/mechanism for obtaining samples the same as that for obtaining data (Q14 above)?
Q17. Is information on biological characteristics available to other groups?
Types: Population Cohorts
Member States: Sweden
Diseases: Alzheimer's disease & other dementias
Database Categories: N/A
Database Tags: N/A
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