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What is the BrainWorks Study?

Doctors caring for patients with inflammatory brain diseases including CNS vasculitis around the world have teamed up with basic science and clinical researchers, families, medical specialists and supportive organizations to establish a network that we call BrainWorks. The BrainWorks team built a web-based, international prospective cohort of patients from around the world with brain inflammation. The patients' privacy is highly protected, no personal, identifiable information is included.  

Our mission

The aim of BrainWorks is to learn from each and every individual patient affected by devastating inflammation of the brain and spinal cord. The interdisciplinary network aims to increase recognition, promotes rapid diagnostic evaluation, optimizes treatment and prevents brain damage. This unique collaboration will foster high quality research that will improve the outcome of patients with CNS vasculitis and inflammatory brain diseases around the world. 

BrainWorks will teach us?

  • How patients  typically present with different subtypes of  inflammatory brain diseases. This information will enable us to expedite the diagnostic process, develop and validate diagnostic criteria and treat children as early as possible -before permanent brain damage occurs
  • What the mimics of brain inflammation in patients are; which diseases have to be considered and excluded before starting immunosuppressive medication 
  • Which diagnostic test should be performed to confirm a specific diagnosis with the least amount of burden for the patient and family
  • Which is the most effective and safe treatment to control inflammation and how long do we need to treat to allow the brain and spinal cord to heal 
  • What  side effects of medication patients may experience and how to prevent them
  • How long will it take for patients to recover and who may be at risk for long-term brain injury
  • Which is the most effective rehabilitation strategy to re-gain neurological function
  • What is the impact of brain inflammation on cognitive function and how could we prevent cognitive deficits
  • What is the social impact of brain inflammation and how could we support families on their difficult journey  

BrainWorks will lead to discovery of:

  • Diagnostic algorithms which will expedite the diagnosis with the least amount of invasive tests
  • Biomarkers and novel imaging strategies which will help avoiding invasive procedures such as brain biopsies in the future
  • Risk profiles which will identify patients at the highest risk requiring tailored therapies for prevention of brain damage
  • Treatment protocols that lead to the best possible outcomes which will ensure equal standard-of-care no matter where a patient lives
  • Rehabilitation strategies and tailored social support which will optimize the neurological recovery and decrease the huge burden on families 

The BrainWorks study was initiated by Dr. Susanne Benseler, Section Chief Rheumatology and Deputy Head Research at Alberta Children’s Hospital and senior scientist at the Hospital for Sick Children.  Dr. Christian Pagnoux (adult Rheumatologist at Mount Sinai Hospital, Toronto), founder of CanVasc, a Canadian network for research on vasculitis, has teamed up to develop the Adult BrainWorks network, with the help of other adult physicians. BrainWorks thus includes clinical data collection on both paediatric and adult patients. Together Drs. Benseler and Pagnoux chair the steering committee for the BrainWorks Study. The interdisciplinary BrainWorks Investigator Network brings together leading experts in CNS vasculitis and inflammatory brain diseases around the world.

How to join BrainWorks?

We welcome rheumatologists, neurologists and all other specialties to become a BrainWorks investigator. If you are interested in participating, please send your request to brainworksstudyAB@gmail.com. To join BrainWorks, investigators must first obtain a local institutional research ethics approval and sign a data sharing contract with the Hospital for Sick Children.  The BrainWorks team will assist centers obtain ethics approval.

If you already are a BrainWorks investigator please click the following link to go to the database: BrainWorks Database.