Care providers working with health professionals in Ontario have come up with a shortlist of the top 10 questions around research covering neurodevelopmental disorders. Participants in the project hope these questions will help prioritize and guide the direction of future research into brain disorder research.
The Ontario Brain Institute (OBI), a provincially funded not-for-profit, conducted Canada’s first Neurodevelopmental Disorders Priority Setting Partnership workshop in Toronto in partnership with POND (OBI’s research program on neurodevelopmental disorders) and the James Lind Alliance (JLA).
“The priority setting process will set the tone for future research of neurodevelopmental disorders,” said Dr. Tom Mikkelsen, President & Scientific Director at Ontario Brain Institute. “To fully capitalize on our learnings, OBI will methodically communicate the top 10 questions to broader neuroscience research community and work with researchers, funders, and policymakers to help ensure the priorities are adopted, addressed and translated into real-world impact.”
The priority setting process gathered over 1200 questions from 300 respondents across Ontario.
Patients, caregivers, advocates, and health/education professionals consolidated, prioritized and ultimately distilled these questions into a shortlist of 10 research priorities.
The 10 questions are:
- What are the most effective treatment options/plans (e.g., timing, frequency, duration, type, intensity or dosage) for individuals with neurodevelopmental disorders for both short and long-term benefits?
- How can system navigation be organized in a manner that enables coordinated services and supports across the lifespan for individuals with neurodevelopmental disorders and their families?
- Which biological treatments (including medications, gene therapy, stem cell therapy, etc.) are effective for neurodevelopmental disorders and associated symptoms?
- Which child and family-centred interventions or approaches promote optimal individual and family functioning?
- Which interventions best help individuals with neurodevelopmental disorders develop emotional and behavioural regulation (including increasing impulse control and reducing compulsive behaviour)?
- Which resources are needed to more effectively address the health, social and emotional needs of families or caregivers of individuals with neurodevelopmental disorders?
- How can treatment decisions for individuals with neurodevelopmental disorders be more precise (i.e., based on the diagnosis, age, and the functional need of the individual)?
- Which are the most effective pharmacological and non-pharmacological treatments for aggressive and self-injurious behaviour in individuals with neurodevelopmental disorders?
- Which are the most effective pharmacological and non-pharmacological intervention(s) to reduce anxiety in individuals with neurodevelopmental disorders?
- Which interventions are most effective to help individuals with neurodevelopmental disorders improve their social skills and develop and maintain social relationships?
To maintain transparency and accuracy throughout the priority setting process, OBI and POND formed a Steering Group that included members from Holland Bloorview, Autism Ontario, Community Living Toronto, Children’s Hospital London Health Sciences Centre and The Centre for Addiction and Mental Health to help shape the process and eliminate any bias in the course.
With this priority setting workshop, OBI along with its community partners will be able to accelerate towards a common goal of improving the lives of people living with neurodevelopmental disorders.
“Asking the right questions is an integral part of the research, hence setting priorities in partnership with the patient community is central to ensuring our work has a direct impact,” said Dr. Evdokia Anagnostou, senior clinician scientist, Holland Bloorview Kids Rehabilitation Hospital and Chair of the Steering Group.