Title of study

    ONTology-based Web Database for Understanding Amyotrophic Lateral Sclerosis (Sweden)

    Acronym for cohort

    ONWEBDUALS

    Name of Principal Investigator - Title

    Prof

    Name of Principal Investigator - First name

    Mamede

    Name of Principal Investigator - Last name

    de Carvalho

    Address of institution -Institution

    Institutionen för farmakologhi och klinisk neurovetenskap

    Address of institution - Street address

    Address of institution - City

    Umeå

    Address of institution - Postcode

    901 85 Umeå

    Country

    Sweden

    Website
    Contact email
    Funding source

    VR

    Q1a. Please indicate below if your cohort includes or expects to include, incidence of the following conditions?

    Motor neurone diseases| Prion disease

    Q2a. In a single sentence what is the stated aim of the study? (Maximum 30 words)

    ALS genetic epidemiology and environmental exposure in 4 EU countries Portugal, Germany, Poland, Sweden

    Q2b. What distinguishes this case-control study from other studies?

    systematic collecting of data in 4 countries combined with genetic studies

    Q3a. i) Number of publications that involve use of your cohort to date

    0

    Q3a. ii) Please give up to three examples of studies to date (PI, Institution, Title of Study)

    n/a

    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

    Association between exposure and specific defined genetic variants of ALS

    Q4a. Study criteria: what is the age range of participants at recruitment? Age in years From:

    18

    Q4a. Study criteria: what is the age range of participants at recruitment? To:

    until death

    Q4b. Study criteria: what are the inclusion criteria?

    standard EFNS clinical diagnostic criteria for ALS

    Q4c. Study criteria: what are the exclusion criteria?

    lack of informent consent from the patient to participate. Patients with very advanced disease

    Q5a. What is the size of the cohort (i.e. how many participants have enrolled)?

    1,001-5,000

    Q5b. What is the expected number of control participants?

    200-500

    Q6a. Please describe what measures are used to characterise participants

    Standard neurological measures

    Q6b. Are there additional measures for participants with the clinical disorder?

    Genetic analysis for specified ALS genes

    Q6c. Are there defined primary and secondary endpoints (e.g. defined health parameters)?

    No

    If YES please specify

    Q7. What is the study design?

    Prospective cohort| dna analysis for SOD1 and C9orf72 mutations

    Q8. Are your cases matched by

    Age| Sex| Cognitive function| Genetic results

    Q9a. Does your study includes a specialised subset of control participants?

    No

    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?

    No

    Q11. Are data collected

    Only through the study

    Q12. Is there a system in place to enable re-contact with patients for future studies?

    No

    Q13a. Please give information on data stored in a database (1)

    No

    % Available

    Q13a. Please give information on data stored in a database (2)

    Database is web-based

    % Available

    unknown

    Q13a. Please give information on data stored in a database (3)

    Database on spreadsheet (e.g. excel)

    % Available

    Unknown

    Q13a. Please give information on data stored in a database (4)

    No

    % Available

    Q13a. Please give information on data stored in a database (5)

    No

    % Available

    Please specify language used

    % Available

    Q13b. Please give information on how data is held as individual records

    Data is web-based

    % Available

    Q14a. Are data available to other groups?

    No

    Q14b. If data is available to other groups what is the access policy/mechanisms for access?

    Not applicable

    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?

    No

    Q16b i) If yes, please describe below

    Q16b. ii) In what form are tissues/samples/DNA supplied?

    Primary samples: Supplied fresh| 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)?

    Yes

    Q17. Is information on biological characteristics available to other groups?

    No

Types: Case Control Studies
Member States: Sweden
Diseases: Motor neurone diseases, Prion disease
Years: 2016
Database Categories: N/A
Database Tags: N/A

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