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

Website


www.kompetenznetz-parkinson.de

Contact email


[email protected]

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

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