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Functional FAQs

Registration

How do I register as a member of the MSBase Registry?

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.

How can I change my profile?

Click on the User name link at the top of the page, present at the top of all pages, to return to the registration form and change data you have entered.

iMed data sets

How can I upload data sets to the site?

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.

Are the data submitted to the MSBase registry treated confidentially and anonymously?

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.

Benchmarking

How can I compare my uploaded datasets to larger datasets in the MSBase registry?

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

Sub-studies

What is a sub-study?

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.

How do I join a sub-study?

Go to Sub-studies > Other sub-studies to view the names of existing groups. You can ask to join a group by clicking on the button "Join this Sub-study". A notification will automatically be sent to the sub-study group leader who will answer your request directly.

How do I create a sub-study group?

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.

How do I manage a sub-study that I create?

As leader of a sub-study you have access to an extended menu with specific Sub-study Administration functions. • Edit Sub-study profile: this allows you to change the name and attributes of a sub-study as long as you are the only member of the group. • Publish news: post news articles. • Manage members: list all participants of the sub-study, and allows you to withdraw members if needed. • Membership requests: view, and accept or refuse applications for membership. • Manage Documents: add and remove files to the group's file cabinet, from where they can be shared by group members. • Export data: allows you to export the entire sub-study dataset into an Excel file.

I want to set-up a national registry, how should I proceed?

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.

How can I delete one of my sub-studies?

You must be the creator and only participant of a sub-study to be able to delete it. All existing members within the study must be removed prior to deletion. Go to Sub-studies > My sub-studies and enter in the desired sub-study. Select Edit sub-study profile in the Sub-study Administration menu and click on the button Delete sub-study.

Can the group leader be changed?

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

How do I manager new and existing members?

As the group leader, you will be notified when you receive requests to join the group. Profiles of the candidates may be viewed before accepting or declining their membership. The group leader can view the profiles. Members may also be removed from the group by the group leader

Who can post sub-study news items?

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.

What can I do within a sub-study?

Each sub-study has its own private area, a sort of miniature website with the following sub-sections:

Each sub-study has its own private area, a sort of miniature website with the following sub-sections: • Home: view news articles posted by the group leader • Enrolment status: displays the number of patients enrolled in the sub-study, and the contribution of each study group member • Benchmarking: comparison of a sub-study member's dataset with the group's aggregate dataset or, the group's aggregate dataset with the MSBase entire dataset • Analysis: simple regression or ANOVA on a selection of key parameters • Forum: discussion within the group • Member list: a compendium of members of the group • Documents: files, posted here by the group leader, can be shared between all members of the group

General inquiries and membership assistance

Email: info@msbase.org
Phone: +61 3 9903 8264

Address:
Central Clinical School @ The Alfred Centre
99 Commercial Road
Melbourne VIC 3004, AUSTRALIA