Reference Center for Prion Diseases in Poland

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
    [email protected]
    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

    Reference Center for Prion Diseases in Poland

     

     

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