"A world-wide prospective study of INC on prognosis and biomarkers in GBS"

A world-wide prospective study of INC on prognosis and biomarkers in GBS

IGOS Update November 2018 Nov/01/2018

As you know, the IGOS Coordination Center is developing a large database of anonymous clinical data for research use. The Coordination Center and researchers accessing these data will never have access to the original details (i.e. name, date of birth, other identifying details). This is to ensure the privacy and protection of patients included.

However, this does mean that for data quality checks and patient follow ups, local investigators need to keep personal details of included patients and their corresponding IGOS codes safe and accessible if needed at a later stage.This will be particularly important as we begin additional research projects and learn more about the data (finding mistakes, anomalies, missing visits etc).

To ensure we are compliant with these new regulations, we have asked all investigators to complete and return a quick, straight-forward form. The form gathers the following details:

1. Confirmation that a Subject Code ID list is kept on site to identify patients
2. Whether this list is kept in a paper or digital format
3. Date of last update
4. Person responsible for updating the list
5. Location of the list at your site (e.g. locked storage cabinet, password protected computer drive etc.)

We appreciate the efforts of all IGOS investigators to ensure we are compliant with the GDPR and patient information is protected.

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