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

mariab@cmdik.pan.pl

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

Types: Population Cohorts
Member States: Poland
Diseases: Alzheimer's disease & other dementias, Neurodegenerative disease in general, Parkinson's disease & PD-related disorders
Years: 2011
Database Categories: N/A
Database Tags: N/A

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