Title of the cohort
Cohort – 95+
Acronym for cohort
95+
Name of Principal Investigator
| Title | Professor |
| First name | Ingmar |
| Last name | Skoog |
Address of institution where award is held
| Institution | Neuroscience and Physiology, Neuropsychiatric epidemiology, Gothenburg University |
| Street Address | Wallinsgatan 6 |
| City | |
| Postcode | 431 41 |
Country
- Sweden
Website
www.epinep.gu.se
Contact email
Funding source
1) The Swedish Research Council (VR)
2) Swedish Council for Working Life and Social Research (FAS)
3) US Alzheimer Association
1. The cohort includes, or expects to include, incidence of the following conditions
- Alzheimer’s disease and other dementias
- Neurodegenerative disease in general
When studies on the above condition(s) are expected to become possible
- Already possible
2a. Stated aim of the cohort
To study dementia, other mental disorders (depression, psychotic disorders, anxiety disorders), suicidal behaviour and cognitive function in the very old in longitudinally followed 95 year-olds
2b. Features distinguishing this cohort from other population cohorts
3a. i) Number of publications that involve use of cohort to date
6
3a. ii) Up to three examples of studies to date (PI, Institution, Title of Study)
3b. Publication list/link to where data or publications are accessible (if available)
www.epinep.gu.se
3c. Information (i.e. research findings) expected to be gained from the population cohort
4a. Study criteria: age range of participants at recruitment
| Age in years from: | 95 |
| To (‘until death’ if applicable): | 107 |
4b. Study criteria: inclusion criteria
Aged 95 born 1901-11 and living in Gothenburg, Sweden
4c. Study criteria: exclusion criteria
none
5. Size of the cohort (i.e. number of participants enrolled)
- 1,000 – 5,000 participants
6a. Measures used to characterise participants
These studies include psychiatric examinations, close informant interviews, psychometric testings, physical examinations, blood sampling, DNA-analyses, comprehensive laboratory tests, social factors, ADL and case record studies.
6b. Additional measures for participants with a clinical disorder
6c. Are there defined primary and secondary endpoints (e.g. defined health parameters)
Dementia and other mental disorders
7. Study design
- Prospective cohort
- Retrospective cohort
- Longitudinal
- Cross sectional survey
8. Cases matched by
- Age
9a. Does the study include a specialised subset of control participants
- No
9b. If yes, description of specialised subset of control participants
10a. i) Data collection start date
01-07-1996
10a. ii) Data collection end date
31-12-2017
10a iii) Data collection for this study is
- Data collection ongoing
- Data analysis ongoing
10b. Plans to continue the cohort study beyond the current projected end date
- Yes – funding applied for
- Yes – intend to apply for funding
11. Data collected
- Through links to medical records
12. System in place to enable re-contact with patients for future studies
- Yes (participants have given permission to be re-contacted via the PIs to ask if they would participate in further studies)
13a. Format and availability of data stored in a database
| Yes/No | % available | |
| Data summarised in database | Yes | 100 |
| Database is web-based | No | |
| Database on spreadsheet | Yes | 100 |
| Database is on paper | Yes | 100 |
| Other (specify) |
Language used:
Swedish
13b. Format and availability of data held as individual records
| Yes/No | % available | |
| Data held as individual records | Yes | 100 |
| Data is web-based | No | |
| Data held on computer based records | Yes | 100 |
| Data held on cards | No | |
| Other (specify) |
Language used:
swedish
14a. Are data available to other groups
Yes
14b. Access policy/mechanisms for access if data are available to other groups
- Apply to PI or co-ordinator at resource
- Access through collaboration with PI only
15. Data sharing policy specified as a condition of use
- No requirement to make data publicly available
16a. Are tissues/samples/DNA available to other groups
Yes
16b. i) Description of available tissues/samples/DNA
- Living donors:blood
- Living donors: blood derivatives
- Living donors: DNA
16b. ii) Form available tissues/samples/DNA are supplied in
- Primary samples: Supplied fresh
- Primary Samples: Stabilised samples (frozen or fixed)
- Secondary samples: plasma
- Secondary samples: DNA
16b. iii) Is the access policy/mechanism for obtaining samples the same as that for obtaining data
Yes
17. Is information on biological characteristics available to other groups
- Yes, for all the cohort