Title of the register
Behavioral Neurology and Movement Disorders Unit
Name of Principal Investigator
| Title | Prof Dr |
| First name | Hakan |
| Last name | Gurvit |
Address of institution where award is held
| Institution | Istanbul Faculty of Medicine |
| Street Address | Millet caddesi |
| City | Istanbul |
| Postcode | 34390 Capa |
Country
Turkey
Website
Not availbale for the Unit
Contact email
1. Conditions included, or expected to be included, in the disease register
Alzheimer’s disease and other dementias Parkinson’s disease Spinocerebellar ataxia (SCA)
2a. Stated aim of the cohort
To register all patients in a systematic way, who consult the Behavioral Neurology and Movement Disorders Unit
2b. Features distinguishing this register from other disease registers
Nothing special
3a. i) Number of publications that involve use of register to date
2
3a. ii) Up to three examples of studies to date (PI, Institution, Title of Study)
| 1. Name of PI | Prof Jale Yazici; Prevelance of pain in Parkinson’s disease Assoc Prof Hasmet Hanagasi, LRKK2 mutation analysis in Turkish PD patients Dr Ebba Lohmann; Genetic analysis of sporadic and familial PD in Turkish patients |
3b. Publication list/link to where data or publications are accessible (if available)
Pain in PD is in publication, other papers are in preparation
4a. Study criteria: age range of participants
| Age in years from: | Any age except for young children |
4b. Study criteria: inclusion criteria
This is a general registry, no strict inclusion criteria
4c. Study criteria: exclusion criteria
see above
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 demographic features
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
01-01-2001
7b. Stage of data collection/analysis for the register
Data collection ongoing
8. Funding of the register
| How the register is funded | No regular funds |
| Is funding ongoing | n.a. |
| If so, for how long | n.a. |
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 |
12b. Data held as individual records
| Yes/No | % available |
| Yes |
13a. Are data available to other groups
1
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: DNA
15b. ii) Form available tissues/samples/DNA are supplied in
Primary samples: Supplied fresh Primary Samples: Stabilised samples (frozen or fixed)
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