Title of the register
GEDOC Clinical Database
Name of Principal Investigator
| Title | MD, PhD, Associate Professor |
| First name | Miia |
| Last name | Kivipelto |
Address of institution where award is held
| Institution | KI-Alzheimer Disease Research Center |
| Street Address | Stockholm |
| City | 14186 |
Country
Sweden
Website
www.karolinska.se
Contact email
1. Conditions included, or expected to be included, in the disease register
Alzheimer’s disease and other dementias
2a. Stated aim of the cohort
To collect data about patients at the Memory Clinic, Karolinska University Hospital, Huddinge that can be used for quality control and studying etiology and diagnoses of AD
2b. Features distinguishing this register from other disease registers
Includes most of the patients coming to the Memory Clinic. Detailed investigations including CSF, neuroimaging, neuropsychological tests etc
3a. i) Number of publications that involve use of register to date
20
3a. ii) Up to three examples of studies to date (PI, Institution, Title of Study)
| 1. Name of PI |
4a. Study criteria: age range of participants
| Age in years from: | no limit |
| To (‘until death’ is applicable): | no limit |
4b. Study criteria: inclusion criteria
Patient investigated at the Memory Clinic and signed informed consent
4c. Study criteria: exclusion criteria
none
5. Size of the register (i.e. number of patients enrolled)
1,001 – 5,000 clinical cases
6a. Measures used to characterise participants
Clinical and neuropsychological examination, depression scale, blood tests, neuroimaging, EEG, CSF
6b. Are there defined primary and secondary endpoints (e.g. defined health parameters)
No
7a. i) Is the register of fixed duration
1
7a. ii) Data collection start date
01-01-1998
7b. Stage of data collection/analysis for the register
Data collection ongoing
8. Funding of the register
| How the register is funded | FoUU |
| Is funding ongoing | yes |
10.The clinical (phenotypic) information held in the register from patients and other participants such as family members is
Routinely collected as medical records
11. Limit on the number of studies that can be based on this set of patients
No
12a. Data stored in a database
| Yes/No | % available |
| yes | 50 |
13a. Are data available to other groups
2
13b. Access policy/mechanisms for access if data are available to other groups
Access Committee mechanism
14. Data sharing policy specified as a condition of use
No policy exists
15a. Are tissues/samples/DNA available to other groups
2
15b. i) Description of available tissues/samples/DNA
Living donors:blood Living donors: blood derivatives Living donors: DNA Living donors: cerebro-spinal fluid
15b iii) Is the access policy/mechanism for obtaining samples the same as that for obtaining data
2
16a. Is information on biological characteristics available to other group
16b. Is the access policy/mechanism for obtaining details of the characteristics the same as that for obtaining other data
2