Cohort – Diagnosis and treatment of dementia patients

Title of the cohort
Cohort – Diagnosis and treatment of dementia patients
Acronym for cohort

Name of Principal Investigator

Title Prof.
First name Maria
Last name Barcikowska

Address of institution where award is held

Institution Medical Research Center Polish Academy of Sciences
Street Address 5 Pawinski Str.
City Warsaw
Postcode 02-106

Country

  • Poland

Website
www.cmdik.pan.pl
Contact email
[email protected]
Funding source
Governmental grants
1. The cohort includes, or expects to include, incidence of the following conditions

  • Alzheimer’s disease and other dementias
  • Parkinson’s disease
  • Neurodegenerative disease in general

When studies on the above condition(s) are expected to become possible

  • Already possible

2a. Stated aim of the cohort
Research on clinical, genetic and proteomic markers of neurodegenerative disorders in early stage of the disease
2b. Features distinguishing this cohort from other population cohorts
In the clinical part the multidisciplinary team: neurologist, psychiatrists, neuropsychologists and logopedics take care of about 1000 patients with neurodegenerative disorders per year, who are assured a full differential (including genetic) according to international standards
3a. i) Number of publications that involve use of cohort to date
68
3a. ii) Up to three examples of studies to date (PI, Institution, Title of Study)
1/ prof. C. Zekanowski, Medical Research Center Polish Academy of Sciences, "Analysis of genetic variation in late-onset Alzheimer’s disease"
2/ prof.Maria Barcikowska, Medical Research Center Polish Academy of Sciences, "Medical, psychological, sociological aspects of aging in Polish population"
3/ Maria Barcikowska, Medical Research Center Polish Academy of Sciences, "Analysis of the role of PARK2, TFAM and mitochondrial control region varaibility in pathogenesis of early onset Parkinson’s disease and the study of the influence of mutated parkin and mitochondrial physiology"
3b. Publication list/link to where data or publications are accessible (if available)
PubMed, Barcikowska M.
3c. Information (i.e. research findings) expected to be gained from the population cohort

4a. Study criteria: age range of participants at recruitment

Age in years from: 38
To (‘until death’ if applicable): until death

4b. Study criteria: inclusion criteria
Dementia, MCI only ambulatory
4c. Study criteria: exclusion criteria
Severe agitations, non ambulatory, beridden
5. Size of the cohort (i.e. number of participants enrolled)

  • 1,000 – 5,000 participants

6a. Measures used to characterise participants
MMSE, CDR, GDS, NPI, CT, MRS (some), SPECT (some), APO E, genetic examination (APP, Presenilins1, 2 MAPT, progranuline), CSF Amyloid beta and tau from 2009; 14-3-3 from 2000
6b. Additional measures for participants with a clinical disorder
Somatic, ECG, EEG (some)
6c. Are there defined primary and secondary endpoints (e.g. defined health parameters)

  • No

7. Study design

  • Prospective cohort
  • Retrospective cohort
  • Longitudinal

8. Cases matched by

  • Age
  • Sex
  • Co-morbidities
  • Cognitive function
  • Physical ability

 
9a. Does the study include a specialised subset of control participants

  • Yes

9b. If yes, description of specialised subset of control participants
Not more than 150 cases over 55 years old, free of dementia, examined clinically (MMSE, psychrometric eveluation) and CT
10a. i) Data collection start date
01-12-1998
10a. ii) Data collection end date

10a iii) Data collection for this study is

  • Data collection ongoing
  • Data analysis ongoing

10b. Plans to continue the cohort study beyond the current projected end date

  • Yes – funding applied for

11. Data collected

  • Only through the study

12. System in place to enable re-contact with patients for future studies

  • Yes (participants have given permission to be re-contacted via the PIs to ask if they would participate in further studies)

13a. Format and availability of data stored in a database

Yes/No % available
Data summarised in database  Yes  50
Database is web-based  No
Database on spreadsheet  Yes  50
Database is on paper  No
Other (specify)  No

 
Language used:
Polish
13b. Format and availability of data held as individual records

Yes/No % available
Data held as individual records  Yes  100
Data is web-based No
Data held on computer based records  Yes  50
Data held on cards  Yo  50
Other (specify)

 
Language used:
Polish
14a. Are data available to other groups
Yes
14b. Access policy/mechanisms for access if data are available to other groups

  • Apply to PI or co-ordinator at resource
  • Access restricted to peer-reviewed work
  • Applicant needs to provide separate external ethics approval

15. Data sharing policy specified as a condition of use

  • No policy exists

16a. Are tissues/samples/DNA available to other groups
Yes
16b. i) Description of available tissues/samples/DNA

  • Living donors:blood
  • Living donors: blood derivatives
  • Living donors: DNA
  • Living donors: cerebro-spinal fluid
  • Post-mortem donors: brain
  • Post-mortem donors: spinal cord

16b. ii) Form available tissues/samples/DNA are supplied in

  • Primary Samples: Stabilised samples (frozen or fixed)
  • Secondary samples: derivatives of primary samples
  • Secondary samples: plasma

16b. iii) Is the access policy/mechanism for obtaining samples the same as that for obtaining data
Yes
17. Is information on biological characteristics available to other groups

Cohort – Diagnosis and treatment of dementia patients

Population Cohorts
Poland
Alzheimer’s disease & other dementias|Neurodegenerative disease in general|Parkinson’s disease & PD-related disorders
2011

 

 

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