Title of the register
Reference Center for Prion Diseases in Poland
Name of Principal Investigator
| Title | Dr |
| First name | Beata |
| Last name | Sikorska |
Address of institution where award is held
| Institution | Medical University of Lodz |
| Street Address | Czechoslowacka 8/10 |
| City | Lodz |
| Postcode | 92-216 |
Country
Poland
Website
http://www.umed.pl/pl/index1.php?dir=inf&mn=jednostka&cc=20730600
Contact email
1. Conditions included, or expected to be included, in the disease register
Prion disease
2a. Stated aim of the cohort
Surveillance of human prion diseases in Poland
2b. Features distinguishing this register from other disease registers
This is the only center for prion diseases in Poland
3a. i) Number of publications that involve use of register to date
0
3c. Information (i.e. research findings) expected to be gained from the register
The number of cases is still low and the conclusions need to be verified on a higher number of cases
4a. Study criteria: age range of participants
| Age in years from: | 50 |
| To (‘until death’ is applicable): | until death |
4b. Study criteria: inclusion criteria
Cases fulfilling criteria for probable or possible prion disease
4c. Study criteria: exclusion criteria
No clinical evidence for CJD
5. Size of the register (i.e. number of patients enrolled)
0 – 500 clinical cases
6a. Measures used to characterise participants
Age, sex, clinical symptoms at onset, MRI if available
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
02-01-2003
7b. Stage of data collection/analysis for the register
Data collection ongoing Data analysis ongoing
8. Funding of the register
| How the register is funded | No dedicated funding. Some means from governmental grants for research projects on prion diseases |
9. Data sweeping
| Number of data sweeps that have taken place | 0 |
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 |
| No | |
| No | |
| Yes | 100 |
| Yes | 100 |
| No |
12b. Data held as individual records
| Yes/No | % available |
| Yes | 100 |
| No | |
| Yes | 50 |
| No | |
| No |
13a. Are data available to other groups
2
13b. Access policy/mechanisms for access if data are available to other groups
Apply to PI or co-ordinator at resource Applicant needs to provide separate external ethics approval
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: cerebro-spinal fluid Post-mortem donors: brain
15b. ii) Form available tissues/samples/DNA are supplied in
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
No
16b. Is the access policy/mechanism for obtaining details of the characteristics the same as that for obtaining other data
2