Neurodevelopmental Disorders Priority Setting Partnership

Shaping the future of neurodevelopmental disorder research

OBI is thinking differently about the way we do research.

Traditionally, research topics are chosen by researchers. However, researchers may not be fully aware of the issues and uncertainties that matter most to families and patients. This is why we asked people living with neurodevelopmental disorders, their families, carers, and health/education professionals how research can best meet their needs. Specifically, what questions do they have about treatments and interventions for neurodevelopmental disorders?

Following the James Lind Alliance method for setting research priorities we received 1200+ questions from the community and worked with them to rank which questions were most important.

Thank you to the 250+ people who filled out the surveys and participated in the process.

Here are the priorities from the neurodevelopmental disorder community.

Top 10 Research Priorities for Neurodevelopmental Disorders

  • 1

    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?

  • 2

    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?

  • 3

    Which biological treatments (including medications, gene therapy, stem cell therapy, etc.) are effective for neurodevelopmental disorders and associated symptoms?

  • 4

    Which child and family-centred interventions or approaches promote optimal individual and family functioning?

  • 5

    Which interventions best help individuals with neurodevelopmental disorders develop emotional and behavioural regulation (including increasing impulse control and reducing compulsive behaviour)?

  • 6

    Which resources are needed to more effectively address the health, social and emotional needs of families or caregivers of individuals with neurodevelopmental disorders?

  • 7

    How can treatment decisions for individuals with neurodevelopmental disorders be more precise (i.e., based on the diagnosis, age, functional need of the individual)?

  • 8

    Which are the most effective pharmacological and non-pharmacological treatments for aggressive and self-injurious behaviour in individuals with neurodevelopmental disorders?

  • 9

    Which are the most effective pharmacological and non-pharmacological intervention(s) to reduce anxiety in individuals with neurodevelopmental disorders?

  • 10

    Which interventions are most effective to help individuals with neurodevelopmental disorders improve their social skills and develop and maintain social relationships?

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Check out the data

The data from this initiative is publicly available on OBI’s Brain-CODE platform. It includes the original questions submitted, the associated summary questions, and some de-identified demographics data.

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What's next?

Publishing this top 10 list is the first step in an important dissemination process. We want to make sure these research priorities are widely known so they can be acted upon. The Ontario Brain Institute has the opportunity to lean on our network of funders, researchers and the larger research community to see these questions funded and adopted, ensuring that research focuses on your priorities.

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Highlights from the neurodevelopmental disorder priority setting partnership workshop.

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Step 1: gathering your questions

In a first survey, which closed February 2017, we received 1200+ questions raised by over 250 people across Ontario living with neurodevelopmental disorders, families, carers, advocates and health/education professionals. We received questions related to autism spectrum disorder, attention deficit hyperactivity disorder, intellectual disability, obsessive compulsive disorder, down syndrome, Tourette syndrome, learning disabilities and fragile X syndrome, among others.

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Steps 2 & 3: checking for answers and ranking questions

All of these questions were gathered, grouped by topic and checked against published research to see if they have already been answered. This resulted in a list of 63 true uncertainties—questions that have not already been answered by research. In a second survey, we turned to the community again and asked them to identify which of these 63 questions were most important to them. This resulted in a top 20 list of unanswered questions.

We have also published answers to some of your questions.

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Step 4: agreeing on priorities

We then brought together a diverse group of 31 stakeholders to rank the 10 most important priorities from this list of 20. This group included, among others, individuals with neurodevelopmental disorders, carers, parents, advocates, educators, pediatricians, psychologists, social workers, and behavioural therapists. They shared their perspectives and worked collaboratively to come to a consensus on the top 10 questions for research into neurodevelopmental disorders.

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Step 5: addressing the priorities

With the top 10 priorities determined the work begins to promote these within the research community. OBI and our partners are working to ensure the voice of the community is reflected in ongoing neurodevelopmental disorder research.

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About the process

Step 1: gathering your questions

In a first survey, which closed February 2017, we received 1200+ questions raised by over 250 people across Ontario living with neurodevelopmental disorders, families, carers, advocates and health/education professionals. We received questions related to autism spectrum disorder, attention deficit hyperactivity disorder, intellectual disability, obsessive compulsive disorder, down syndrome, Tourette syndrome, learning disabilities and fragile X syndrome, among others.

read more