Title of the register

    Register Competence Network Parkinson's Disease

    Name of Principal Investigator - Title

    Prof

    Name of Principal Investigator - First name

    Wolfgang

    Name of Principal Investigator - Last name

    Oertel

    Address of institution -Institution

    Philipps University Marburg

    Address of institution - Street address

    Baldingerstraße

    Address of institution - City

    Marburg

    Address of institution - Postcode

    35039

    Country

    Germany

    Q1a. Please indicate below if your cohort includes or expects to include, incidence of the following conditions?

    Parkinson's disease

    Q2. In a single sentence, what is the stated aim of your register?

    Describe Parkinson patients in standardized follow-ups

    Q2b. What distinguishes this register from other disease registers?

    Q3a. i) Number of publications that involve use of your register to date

    0

    Q3a. ii) Please give up to three examples of studies to date (PI, Institution, Title of Study)

    Q3b. If data on research outputs are already available please paste the publication list/other data or provide a link to where these data are publicly available?

    Q3c. If no research has been done as yet, please explain in a few sentences what information (i.e. research findings) you expect will be gained from the register

    Q4a. Study criteria: what is the age range of participants? Age in years: from

    18

    Q4a. Study criteria: what is the age range of participants? Age in years: to

    until death

    Q4b. Study criteria: what are the inclusion criteria?

    idiopathic PD, MSA, PSP, healthy controls

    Q4c. Study criteria: what are the exclusion criteria?

    no exclusion criteria specified

    Q5. What is the size of the register (i.e. how many patients have been enrolled)?

    Q6a. Please describe what measures are used to characterise participants

     demographics, diagnosis, symptomatic, medical, psychological and psychiatric examination, concomitant medication and diseases, medication, imaging, optional assessments: UPDRS, PDQ-39, MADRS, MMSE

    Q6b. Are there defined primary and secondary endpoints (e.g. defined health parameters)?

    No

    If YES, please describe

    Q7a. i) Is the register of fixed duration?

    Yes

    Q7a. ii) Please enter the data collection start date

    01/01/2001

    Q7a. iii) Please enter the data collection end date

    Q7b. Could you provide some information about the data collection for this register?

    Data collection ongoing|Data analysis ongoing

    Q8. Funding of the register - How is the register funded?

    Q8. Funding of the register - Is this funding expected to continue

    Q8. Funding of the register - If so, for how long (months)?

    Q9. Could you provide information about data sweeping? - How many data sweeps have taken place?

    Q9. Could you provide information about data sweeping? - When was the most recent data sweep?

    Q9. Could you provide information about data sweeping? - When is the next data sweep?

    Q9. Could you provide information about data sweeping? - How many more data sweeps are planned on current funding? e.g 0,1,2…..

    Q9. Could you provide information about data sweeping? -How many more data sweeps are planned in total (with funding and with funding yet to be secured) e.g. 0,1,2…

    Q10. Is the clinical (phenotypic) information that is held in the register from patients and other participants such as family members:

    Q11. Is there a limit on the number of studies that can be based on this set of patients?

    If YES, please give details

    Q12a. Please give information on the format and availability of data stored in a database (1)

    % Available

    Q12a. Please give information on the format and availability of data stored in a database (2)

    % Available

    Q12a. Please give information on the format and availability of data stored in a database (3)

    % Available

    Q12a. Please give information on the format and availability of data stored in a database (4)

    % Available

    Q12a. Please give information on the format and availability of data stored in a database (5)

    % Available

    Please specify language used

    Q12b. Please give information on how data is held as individual records (1)

    % Available

    Q12b. Please give information on how data is held as individual records (2)

    % Available

    Q12b. Please give information on how data is held as individual records (3)

    % Available

    Q12b. Please give information on how data is held as individual records (4)

    % Available

    Please specify language used

    Q13a. Is data available to other groups?

    Q13b. If data is available to other groups what is the access policy/mechanisms for access?

    Other access mechanism|Researchers have to ask; data security committee must agree, according to patient agreement details

    Q14. What data sharing policy is specified as a condition of use?

    Data made publicly available after a specified time point

    Q15a. Are tissues/samples/DNA available to other groups?

    Yes

    Q15b. i) If yes, please describe below:

    Q15b. ii) In what form are tissues/samples/DNA supplied?

    Q15b. iii) Is the access policy/mechanism for obtaining samples the same as that for obtaining data (Q13b above)?

    Q16a. Is information on biological characteristics available to other groups?

    If available for a subset please specify number of patients and % of total cohort

    Number of patients

    % of total cohort

    Q16b. If yes, is the access policy/mechanism for obtaining samples the same as that for obtaining data (Q13b above)?

    Yes

Types: Disease Registers
Member States: Germany
Diseases: Parkinson's disease & PD-related disorders
Years: 2016
Database Categories: N/A
Database Tags: N/A

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