Title of studyThe Swedish BioFINDER study
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| Parkinson's disease
Q2a. In a single sentence what is the stated aim of the study? (Maximum 30 words)To development of new biomarkers and brain imaging techniques for Dementia and Parkinsonian disorders with the aim to better understand the diease mechanisms, to improve early diagnosis and to advance drug development.
Q2b. What distinguishes this case-control study from other studies?The BioFINDER study is a prospective and longitudinal study where the studye partcipanst are very well characterised using assessmenst oc cogntive, neurologic and psychitric status, advanced MR imaging, CSF and blood collection, and PET imaging for amyloid and tau. Few such studies are availabel in teh world, why the pharma industry has a high interest in teh study.
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)Oskar Hansson, Lund University, Increased amyloidogenic APP processing in APOE ?4-negative individuals with cerebral ?-amyloidosis| Oskar Hansson, Lund University, 18F-AV-1451 tau PET imaging correlates strongly with tau neuropathology in MAPT mutation carriers| Oskar Hansson, Lund University, Comparison of Amyloid PET and CSF Biomarkers for Identifying Early Alzheimers Disease.
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 availablehttp://biofinder.se/publications/
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?see www.biofinder.se for details
Q4c. Study criteria: what are the exclusion criteria?see www.biofinder.se for details
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
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?
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 describe350 healthy elderly cases with cognitive testing, MRI, CSF biomarkers, blood biomarkers, Amyloid PET and some also Tau PET
Q10a. Is data collection for this studyData collection ongoing| Data analysis ongoing| Closed to new patients
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
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)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)Database on spreadsheet (e.g. excel)
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 used100% of baseline data, but longitudinal data is still colllected
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?Access through collaboration with PI only| Local/ regional access| National access| International access| Access to industry| Access for pilot studies permitted
Q15. What data sharing policy is specified as a condition of use?No requirement to make data publicly available
Q16a. Are tissues/samples/DNA available to other groups?
Q16b i) If yes, please describe belowLiving donors: blood| Living donors: DNA| Living donors: cerebro-spinal fluid
Q16b. ii) In what form are tissues/samples/DNA supplied?Secondary samples: plasma| Secondary samples: DNA
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: Sweden
Diseases: Alzheimer's disease & other dementias, Parkinson's disease & PD-related disorders
Years: 2016
Database Categories: N/A
Database Tags: N/A
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