wsext.ccb.sickkids.ca/joomla

http://pedsdemyelination.ccb.sickkids.ca/

Abstract

Multiple Sclerosis (MS) is a disease defined by recurrent attacks of neurological disability associated with evidence of immune-cell mediated destruction of white matter (demyelination) in the brain and spinal cord. Adults experiencing an initial attach, also known as a "clinically isolated syndrome (CIS)" face an uncertain future, as only a proportion go on to experience the recurrent attacks that characterize MS. This study will be the first population-based study of pediatric CIS. Currently, the annual incidence of CIS in Canadian children, the clinical outcome (morbidity), and the MS risk in this population remain unknown. Identification of factors predictive of (or strongly associated with) MS will lead to better long term follow up and care for pediatric CIS patients and offers the potential for early initiation of therapy

The project involves a number of technological initiatives in which the CCB is involved.

The first is the web site, where Dr. Banwell, and her study team provided all content. The CCB developed and is hosting this web site.

Second, is a study tracking database, accessible only to registered users through the web site. Site coordinators across Canada obtain blood samples, MRI scans and complete clinical forms for each patient, at each visit. The blood samples in particular are extremely time-sensitive, and must be sent to the lab in Montreal immediately. The study tracking database allows the site coordinators to log in, and indicate which patient's samples are being sent to the appropriate labs. The recipients can also log into the database, to see which samples they are to expect, and acknowledge them upon receipt. In this way, samples can be tracked and logged. This also helps the site administrator to follow up on the activities of the national sites. No patient identifiable information is being passed over the internet. The CCB has developed the tracking database from user requirement analysis, through the programming, deployment, and hosting.

To organize and store the large anticipated volume of the patient blood samples, the study team has purchased TissueMetrix system from AIM (Artificial Intelligence in Medicine). The CCB is hosting this database, with restricted access to the database from the Montreal Neurological Institute and The Hospital for Sick Children. To avoid duplication of data entry for the lab, the CCB developers set up an automated updating process that cross references newly added information in the Tissue Metrix system with it's original entry in the tracking system and automatically updates the tracking database to show receipt of materials. It is programmed to run daily; functionality is also provided in the tracking system interface to allow study administrators to trigger an immediate update at any time.

Finally, the CCB designed and developed the "clinical system". The study manager and coordinators enter and maintain the clinical and genetic information (optionally) for all study participants from SickKids and all of the study sites across Canada. This database contains patient identifiable information and will not be accessible externally. All external data will be forwarded to the study administrator on paper, and will be entered within SickKids. This has the added benefit of providing consistency of data entry, allowing for more complete and accurate set of data for long term analysis.