MSBase

Click on the 'Sign up' link at the top right side of the page and complete the registration form accordingly. There are two forms of membership within the MSBase Registry- 1. Principal Investigator: This membership is best suited to the Neurologist in charge of the MS unit at your centre as they have the appropriate authorisation required to transfer codified patient data to the MSBase Registry. 2. Investigator: This is for those working with the Principal Investigator, and will include staff such as other neurologists, nurses, research fellows and administration staff. An MSBase staff member will process each registration request and will advise of the correct membership to suit your role.

Click on the 'Sign up' button at the top right hand corner of the website and complete the registration forms.

In iMed select the "MSBase" tab and press the button "Send now" This will generate an anonymised dataset compatible with MSBase. A window appears asking for your MSBase Login and Password. After you identify yourself, press the button "Submit" to upload the dataset into your MSBase account. When the data transfer is completed, the Benchmarking page on is displayed on the MSBase website. Alternative method: You can also save a dataset from iMED and later upload it from MSBase: 1. In iMed select the "MSBase" tab and press the button "Save File". This will copy an anonymized dataset - named MSBaseExtract.xml.gz - into the folder "MSBase dataset" located under the iMed folder on your hard-drive (probably c:\iMed\MSBase dataset\MSBaseExtract.xml.gz). 2. Run your web browser and go to www.msbase.org. Log in using your MSBase Login and Password. Click on the menu "My Data", then "Upload data". Click the button "Browse" and find the file MSBaseExtract.xml.gz located in the folder "MSBase_Dataset" in the iMED folder on your hard-drive. Press the button "Submit" to upload the dataset into your MSBase account. When the data transfer is completed, a confirmation page is displayed with a link to your Benchmarking page.

Yes, the bylaws of the MSBase registry require each stakeholder to maintain strict confidentiality over individual patient, caregiver, physician, and clinic data. Individual neurologists will have access only to their own patient data and pooled results of aggregate outcomes in the registry. All clinic-, physician-, patient-, or caregiver-specific information will be blinded in reports and any other articles published under the auspices of the registry. Likewise, the sponsor will have access to aggregate reports only, not to individual patient, physician, or hospital data. Each physician will assure that anonymity of study participants is maintained. On the iMed extract files or other documents submitted to the Registry or its designees, patients will not be identified by name, but rather by the assigned identification (ID) number. Confidentiality is maintained through the following measures The extract files sent to the Registry will not contain any "personal data", i.e. any information relating to an identified or identifiable individual. Each patient is assigned a globally unique identification code by the physician's local iMed which will not be released outside of the database. The association between identification code and patient identity is only available on the physician's local iMed. The Scientific Advisory Board intends to publish the findings of the Registry at medical congresses and submit manuscripts to peer review journals at regular intervals. It is also possible that specific symposia will be organized so that members can present and discuss their findings from MSBase.

The benchmarking function, accessible via MSBase registry > Benchmarking, displays graphics comparing datasets you have uploaded to the MSBase registry with the aggregated data in: • a sub-study • the entire MSBase registry Comparisons are made by the following parameters: • demographics (eg, age at onset, at diagnosis, etc) • clinical outcome at last visit (eg, distribution of EDSS) • treatment and paraclinical tests

MSBase Registry members may form what are known as study groups, or sub-studies. The prime purpose of a sub-study group is to undertake collaborative multi-centre research on a sub-set of the MSBase global dataset according to the objectives of the specific sub-study. Groups are also able to maintain forums accessible on to their members, and exchange news items.

Go to Sub-studies > Create sub-studies and click on Create sub-study. You will be guided through a simple 4 step process at the end of which you automatically become the group Leader

Go to Sub-studies > Create sub-studies, and click on Create sub-study. Follow the instructions: fill-in the sub-study description (Step 1), the Patient inclusion criteria if any (Step 2), and select your country (Step 3). On the last page, press the button Submit. Note that the creator of a group is automatically the group leader.

The sub-study is automatically approved. It will then appear in your list of sub-study and for the other users under "Other sub-studies".

If another member of the group is willing to assume the role, the group leader can be changed by emailing a request to support@msbase.org

Only the group leader may publish documents into the group 'Documents' section. Members may submit files to the group leader for publishing.

Only the group leader may post news items to the group, using the 'Publish news' section. Group members may submit items to the group leader for posting.