Title of study
Clinical, imaging and biological investigations of frontotemporal dementia and related conditions
Name of Principal Investigator - Title
Name of Principal Investigator - First name
Name of Principal Investigator - Last name
Address of institution -Institution
Address of institution - Street address
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|Motor neurone diseases
Q2a. In a single sentence what is the stated aim of the study? (Maximum 30 words)
Improving diagnosis, prognosis and clinico-pathological correlations of frontotemporal dementia and related neurodegenerative brain conditions
Q2b. What distinguishes this case-control study from other studies?
Comprehensive investigations of these disorders that include clinical, cognitive, neuroimaging, biological and genetic investigations with brain banking for pathological confirmation
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 diagnosis of frontotemporal dementia or presence of causative mutation for the disease
Q4c. Study criteria: what are the exclusion criteria?
Other CNS related conditions; mental disorders; TBI; history of subtance abuse
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
Clinical, cognitive, neuroimaging, biological investigations
Q6b. Are there additional measures for participants with the clinical disorder?
Q6c. Are there defined primary and secondary endpoints (e.g. defined health parameters)?
Q7. What is the study design?
Prospective cohort|Retrospective cohort|Age|Sex
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|Data analysis ongoing
Q10b. If data collection is ongoing, are there plans to continue the cohort study beyond the current projected end date?
Yes - funding applied for
Q11. Are data collected
Only through the study|Through links to medical records
Q12. Is there a system in place to enable re-contact with patients for future studies?
Yes (participants have given permission to be re-contacted via the PIs)
Q13a. Please give information on data stored in a database (1)
Data summarised in database
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?
Apply to PI or co-ordinator at resource|Local/ regional access|National access|International access|Resource has own ethics approval so usually no need for separate external ethics approval
Q15. What data sharing policy is specified as a condition of use?
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?
Types: Case Control Studies
Member States: Australia
Diseases: Alzheimer's disease & other dementias, Motor neurone diseases
Database Categories: N/A
Database Tags: N/A
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