Title of study
Acronym for cohort
Name of Principal Investigator - Title
Name of Principal Investigator - First name
Name of Principal Investigator - Last name
Address of institution -Institution
University of Ulm, Department of Neurology
Address of institution - Street address
Oberer Eselsberg 45
Address of institution - City
Address of institution - Postcode
Q1a. Please indicate below if your cohort includes or expects to include, incidence of the following conditions?
Alzheimer's disease and other dementias
Q2a. In a single sentence what is the stated aim of the study? (Maximum 30 words)
To observe appearance and progression of FTLD
Q2b. What distinguishes this case-control study from other studies?
Q3a. i) Number of publications that involve use of your cohort to date
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 case-control study
Q4a. Study criteria: what is the age range of participants at recruitment? Age in years From:
Q4a. Study criteria: what is the age range of participants at recruitment? To:
Q4b. Study criteria: what are the inclusion criteria?
clinical phenotype consistend with a FTLD spectrum disorder
Q4c. Study criteria: what are the exclusion criteria?
Other neurodegenerative diseases
Q5a. What is the size of the cohort (i.e. how many participants have enrolled)?
Q5b. What is the expected number of control participants?
Q6a. Please describe what measures are used to characterise participants
Behavioural assessment battery; FBI; NPI; AES-C; GDS-15; CRS; E60F; ZBI-12; FTLD
Q6b. Are there additional measures for participants with the clinical disorder?
Q6c. Are there defined primary and secondary endpoints (e.g. defined health parameters)?
If YES please specify
Q7. What is the study design?
Q8. Are your cases matched by
Q9a. Does your study includes a specialised subset of control participants?
Q9b. If your study includes a specialised subset of control participants please describe
Q10a. Is data collection for this study
Data collection ongoing
Q10b. If data collection is ongoing, are there plans to continue the cohort study beyond the current projected end date?
Yes - intend to apply for funding
Q11. Are data collected
Q12. Is there a system in place to enable re-contact with patients for future studies?
Q13a. Please give information on data stored in a database (1)
Q13a. Please give information on data stored in a database (2)
Q13a. Please give information on data stored in a database (3)
Q13a. Please give information on data stored in a database (4)
Q13a. Please give information on data stored in a database (5)
Please specify language used
Q13b. Please give information on how data is held as individual records
Q14a. Are data available to other groups?
Q14b. If data is available to other groups what is the access policy/mechanisms for access?
Q15. What data sharing policy is specified as a condition of use?
Data made publicly available after a specified time point
Q16a. Are tissues/samples/DNA available to other groups?
Q16b i) If yes, please describe below
Q16b. ii) In what form are tissues/samples/DNA supplied?
Q16b iii) Is the access policy/mechanism for obtaining samples the same as that for obtaining data (Q14 above)?
Q17. Is information on biological characteristics available to other groups?
Yes, for all the cohort
Types: Case Control Studies
Member States: Germany
Diseases: Alzheimer's disease & other dementias
Database Categories: N/A
Database Tags: N/A