Stakeholders Set Research Priorities for Neurodevelopmental Disorders: A Canadian First Facilitated By Ontario Brain Institute, in Collaboration with the Pond Network

Background: Research into treatments often overlooks the shared priorities of patients, caregivers and clinicians. Academia and industry are important in developing and testing new treatments, but their priorities may not be well aligned with those of patients and clinicians. As such, a mismatch between the research being conducted and the research evidence needed by patients and clinicians may develop.

Objectives:

The objective of this study was to to identify research priorities of a wide range of stakeholders in Autism Spectrum Disorder (ASD) and neurodevelopmental disorders (NDD).

Methods: We employed the JLA method to address this gap in ASD and related NDDs. The method brings patient, carer and clinician groups together on an equal footing to identify treatment uncertainties which are important to both groups, jointly prioritise the uncertainties, and produce a 'Top 10' list of jointly agreed uncertainties as research questions to be presented to funders.

Results:

The priority setting process gathered over 1200 questions from 300 respondents across neurodevelopmental disorders across Ontario, Canada. Over a period of one year individuals with ASD and other NDDs, carers, advocates, and health/education professionals consolidated, prioritized and ultimately distilled these questions into a top 10 list of research priorities:

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-centered 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?

At the end of the process, participants expressed high satisfaction with the process and the final top 10 list.

Conclusions:

We carried out a large stakeholder engagement project to elicit priorities for research in ASD and other NDDs, using standardized methodology developed by the JLA. The top 10 priorities will serve as powerful and important tool to spur patient-oriented research into neurodevelopmental disorders.