KidSights Membership
Holland Bloorview is proud to be an inaugural Canadian member of the KidSights Data Consortium.
Created in 2023 by Gillette Children’s, a specialized pediatric children's hospital based in Minnesota, U.S., KidSights is a unique data consortium created to share de-identified, administrative, clinical and demographic data with other member children’s hospitals, industry and researchers to accelerate knowledge, innovation and new discoveries. The consortium will also advance the health and wellbeing of children and youth with disabilities and developmental differences as well as rare genetic conditions. Gillette Children's is the first member of KidSights.
As a KidSights member, Holland Bloorview can:
- fuel innovations in areas like developing specialized equipment, technology and devices that address the needs of children with disabilities and developmental differences;
- access to large-scale datasets in pediatric disability to better understand and design more effective treatments and interventions;
- use data to identify gaps in the system or populations whose needs are not being met to ensure clients and families are getting the care they need and deserve; and
- be part of a global network of excellence with a shared goal to enable more meaningful and health futures for children and youth.
How KidSights Works
Using secure, privacy-enhanced technology, KidSights can access de-identified, real-world clinical health data from member hospitals and combine it with de-identified datasets from other members.
These de-identified datasets can then be shared with authorized commercial innovators (pharmaceuticals, medical device companies, early-stage startups) and researchers around the world to advance research and accelerate new products, medical treatments, devices and drugs – all with the goal to advance the health and wellbeing of clients with complex needs.
Next Steps
Holland Blooview plans to share its de-identified data with KidSights in the summer of 2025. Prior to sharing the data, all active clients and families will receive a letter about six weeks in advance with the opportunity to opt-out. Please visit this data-sharing webpage for more details.
This list of frequently asked questions (FAQ) (PDF) has been created to address questions about Holland Bloorview Kids Rehabilitation Hospital's inaugural membership with Kidsights.
 | “High quality, real-world datasets are critical to gaining insights into individual characteristics that influence trajectories, responses to interventions, and long-term outcomes. These types of insights will help us deliver the right type of care, at the right time, to each child." - Dr. Azadeh Kushki, associate chair of data science and Canada Research Chair in Neurodiversity and Personalized Health, Bloorview Research Institute |
 | “Membership in data consortiums like KidSights unlocks the potential for transformative advancements in care for children and youth with disabilities and neurodevelopmental differences, bringing much-needed hope to kids and families alike, including mine." - Adrienne Zarem, family leader and member of Holland Bloorview Kids Rehabilitation Hospital's Family Advisory Counsel |
 | “When I was in the depths of my PhD examining cognitive communication outcomes after early childhood traumatic brain injury, I would have loved to have access to a dataset to examine populations served outside of Holland Bloorview. To have access to a larger dataset from across different regions, states, and provinces, provides the representation of children and youth with disabilities that is needed to inform clinical care.” - Carly Cermak, speech language pathologist and research associate, Holland Bloorview Kids Rehabilitation Hospital |
Questions about the KidSights membership with Holland Bloorview Kids Rehabilition Hospital? Please contact us by emailing hbconnect@hollandbloorview.ca.
