Title of the register
KNDD-FTLDc
Name of Principal Investigator - Title
Prof
Name of Principal Investigator - First name
Markus
Name of Principal Investigator - Last name
Otto
Address of institution -Institution
University of Ulm, Department of Neurology
Address of institution - Street address
Oberer Eselsberg 45
Address of institution - City
Ulm
Address of institution - Postcode
89081
Country
Germany
Website
Contact email
Q1a. Please indicate below if your cohort includes or expects to include, incidence of the following conditions?
Alzheimer's disease and other dementias|Motor neurone diseases|Neurodegenerative disease in general
Q2. In a single sentence, what is the stated aim of your register?
Epidemiology of FTLD in Germany
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?
clinical phenotype consistend with a FTLD spectrum disorder
Q4c. Study criteria: what are the exclusion criteria?
Not willing to participate
Q5. What is the size of the register (i.e. how many patients have been enrolled)?
1001-5000 clinical cases
Q6a. Please describe what measures are used to characterise participants
clinical, EMG, MRI, CSF, blood
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
01/04/2011
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
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?
No
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?
Yes
Q13b. If data is available to other groups what is the access policy/mechanisms for access?
CONSTITUTION AND BY-LAWS OF THE FTLD NETWORK
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:
CONSTITUTION AND BY-LAWS OF THE FTLD NETWORK
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?
Yes, for all the 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: Alzheimer's disease & other dementias, Motor neurone diseases, Neurodegenerative disease in general
Years: 2016
Database Categories: N/A
Database Tags: N/A