database

Challenge Every person with Fetal Alcohol Spectrum Disorder (FASD) has their own strengths and challenges. That means there is no one-size-fits-all pathway through the available interventions and services. Families have to figure out what makes the most sense given their child’s needs, age, goals and context. Project Summary Kids Health Brain Network has [...]

Challenge Following an FASD diagnostic assessment, individuals will receive a list of recommendations about services, supports and interventions with which to connect. The challenge is that the recommendations are often lengthy, may not always be understandable to families, and are provided and explained at at time when individuals and families are feeling overwhelmed. Project Summary [...]

Challenge There are still a lot of unknowns when it comes to FASD. First, the disorder presents in many different ways. It also remains unclear exactly how alcohol is impacting the brain and what factors contribute to its impact. Project Summary The Canada FASD Research Network National Dataform Project—a comprehensive database of individuals living with [...]

Challenge Researchers across the world have collected vast amounts of data relating to brain development, including information about genes and their expressions in cells, brain structure, electrical activity in the brain, behaviours, diagnosable disorders and more. These data aren’t currently used to their full potential. There are algorithms, databases and software that allow scientists to [...]

Challenge Intellectual disability (ID) affects 800,000 Canadians and is defined by challenges in cognitive functions and daily living activities. Individuals with ID frequently struggle with other issues such as anxiety, autism, epilepsy, sleep problems, and difficulty living independently. But managing an ID diagnosis presents many challenges: individuals must discover which resources are best for them, [...]

Challenge While researchers know that FASD is a result of prenatal exposure to alcohol, the disorder presents in many different ways.  It is important to better understand the presentation of FASD in Canada, patterns and the extent of neurobehavioural impacts, and recommended interventions and supports in order to mitigate adverse issues and maximize developmental trajectories [...]

Challenge The Canadian Cerebral Palsy Registry initially launched in 2003 as a platform to store data from people diagnosed with cerebral palsy (CP). It has since expanded to include more than 2,250 participants with the disorder and has resulted in more than 35 academic publications. The next phase of the project is looking to expand [...]

Challenge More than 80,000 Canadians are living with Cerebral Palsy (CP). Yet, families often feel isolated and are unsure how to find services or where to access the most up-to-date CP-related information. Project Summary The Cerebral Palsy Canada Network (CPCanNet) was created to connect families to information through CP Associations across Canada, by acting as [...]

Challenge There has historically been a lack of population-based information on how cerebral palsy presents in children, including possible risk factors, antecedent causes, functional severity,  and co-morbidities of the condition. To better understand the condition, the Canadian Cerebral Palsy Registry was created in Cycle I. Project Summary The Registry is a confidential, nation-wide collection of [...]

Challenge A lot of genomics data has been published on neurodevelopmental disabilities, but researchers face challenges in accessing this information. Data found in the literature is often scattered and difficult to synthesize, and simply aggregating data onto one platform isn’t sufficient. Project Summary This project aimed to examine the literature on the genomics of FASD, [...]