Title of the register
Turkuaz Alzheimer’s Working Group Register
Name of Principal Investigator
| Title | MD, PhD |
| First name | |
| Last name | Yener |
Address of institution where award is held
| Institution | |
| Street Address | Mithatpasa Cad. |
| City | Izmir |
| Postcode | 35340 |
Country
Turkey
Website
www.epikriz.com
Contact email
1. Conditions included, or expected to be included, in the disease register
Alzheimer’s disease and other dementias Parkinson’s disease Neurodegenerative disease in general
2a. Stated aim of the cohort
To pool the patients’ data across Turkey when needed for a clinical dementia study
2b. Features distinguishing this register from other disease registers
It is the first and the only web-based dementia registry in Turkey, as far as we know.
3a. i) Number of publications that involve use of register to date
3
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: | 40+ |
4b. Study criteria: inclusion criteria
applying to memory clinics nationwide
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
To apply or to be referred to dementia outpatient clinics
6b. Are there defined primary and secondary endpoints (e.g. defined health parameters)
No
7a. i) Is the register of fixed duration
2
7a. ii) Data collection start date
01-09-2006
7a. iii) Data collection end date
01-04-2011
7b. Stage of data collection/analysis for the register
Data collection ongoing
8. Funding of the register
| How the register is funded | Between 01-06-2006 and 01-04-2011 a drug company Sanovel funded this registry |
| Is funding ongoing | We are applying to Turkish Neurological Society |
| If so, for how long | 36 months |
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 | 100 |
| yes | 100 |
| yes | when needed |
| yes | 50 |
12b. Data held as individual records
| Yes/No | % available |
| yes | 100 |
| yes | 100 |
| yes | 50 |
| 0 | 0 |
13a. Are data available to other groups
2
13b. Access policy/mechanisms for access if data are available to other groups
Resource has own ethics approval so usually no need for separate external ethics approval
14. Data sharing policy specified as a condition of use
No requirement to make data publicly available
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
15b. ii) Form available tissues/samples/DNA are supplied in
Primary samples: Supplied fresh Primary Samples: Stabilised samples (frozen or fixed) Secondary samples: derivatives of primary samples Secondary samples: plasma Secondary samples: DNA
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
No
16b. Is the access policy/mechanism for obtaining details of the characteristics the same as that for obtaining other data
2