Phone: (414) 918-9822    Email: [email protected]

BrainWorks

Overview

BrainWorks is an international inflammatory brain diseases study.

Inflammatory Brain Diseases are prevalent, severely damaging, and until now largely mysterious. In these disorders, inflammation targets brain structure of previously healthy patients, potentially leaving behind devastating injury to the brain. Inflammation can be treated and the outcome can be a total recovery when recognized early enough. In 2006, Dr. Susanne Benseler started the BrainWorks registry: An international, multi-center, inflammatory brain diseases study to collect prospective data on children. The project has expanded in April 2015 to include adults with inflammatory brain diseases.

This is an observational study requiring no extra visits, tests or interventions. For more details about the study, diagnostic algorithm, suggested clinical workup and treatment protocols visit our website: www.brainworksstudy.ca.

Aim of the study:

Through BrainWorks, we will capture a large international prospective cohort to develop classifications criteria, predict disease course, treatment response and long-term outcome comparisons between childhood and adult-onset inflammatory brain diseases.

Inclusion Criteria (Adult BrainWorks)

Patient Characteristics:

  • CNS vasculitis (primary or secondary) or inflammatory brain disease either confirmed or suspected.
  • Adults: Age older than 18 years old, Pediatrics: Age greater than 4 weeks but less than or equal to 18 years.
  • Male or Female

Exclusion Criteria

Patient Characteristics:

  • Patients diagnosed prior to January 1, 2006.

REB/IRB Requirements:

  • Local Ethics Approval
  • Fully executed data sharing contract between participating sites & SickKids
  • For assistance with REB/IRB application, please contact Shehla Sheikh ([email protected])

Project PI: Susanne Benseler, MD, PhD

Monthly Case Discussion Series Starting Soon Through WebEX:

We are proud to announce the start of a new monthly educational session open to all members of the BrainWorks Network and anyone who would like to join. These sessions will involve case discussions through WebEx. Co-investigators and collaborators are welcome and encouraged to present challenging cases, receive a second opinion and/or inform the network of new findings. Stay tuned for further announcements on when these sessions will be held and login details for WebEx.