Neurodevelopmental Disorder Priority Setting

If you have a neurodevelopmental disorder, or if you care for or work with someone who does, we want you to help us set research priorities for neurodevelopmental research. The goal of this survey is to hear what questions you want answered by research about diagnosis, therapies, care, and other interventions for neurodevelopmental disorders.  Research is vital to finding better ways to improve the health and wellbeing of people living with neurodevelopmental disorders, but researchers can only do this with your help.

From the first survey, which closed in February 2017, we received 1300 questions from raised by over 300 people across Ontario living with neurodevelopmental disorders, carers and health care professionals. 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 questions that have not already been answered. We want you to identify the top 10 questions that are most important to you. This will help ensure that the work of research funders and researchers focusses on your priorities.

The top 10 researcher priorities for neurodevelopmental disorders are here!

How do I access the survey?

The survey to prioritize your top questions is available here. 

Who should take part in this survey?

People with a neurodevelopmental disorder, their families, their carers, and professionals working with persons who have a neurodevelopmental disorder.

What is involved if I take part in the survey?

The survey involves selecting the top 10 questions you would like answered about diagnosis, therapies, care, and other interventions for neurodevelopmental disorders; as well as a few questions to help us understand who is completing the survey and make sure we hear from as many Ontarians and perspectives as possible.

Which neurodevelopmental disorders are included?

• attention deficient hyperactivity disorder
• autism spectrum disorder (including  autistic disorder, Asperger’s syndrome, childhood disintegrative disorder, pervasive developmental disorder – not otherwise specified),
• Down syndrome 
• fragile X 
• intellectual disability 
• obsessive compulsive disorder 
• Rett syndrome 
• Tourette syndrome 
• learning disabilities 
• other genetic syndromes related to intellectual disabilities

What will we do with your responses?

The 30 top ranked questions from all survey respondents will be taken to a workshop in September where the final top 10 will be agreed upon. This top 10 list of research questions will be published on the James Lind Alliance and Ontario Brain Institute websites and shared publicly. The James Lind Alliance will facilitate this process and ensure transparency, accountability and fairness.

Who is supporting this survey?

Ontario Brain Institute
The Ontario Brain Institute (OBI) is a provincially-funded, not-for-profit research institution seeking to maximize the impact of neuroscience and establish Ontario as a world leader in brain research, commercialization and care. OBI is financially supporting this priority setting partnership, as well as helping to facilitate the process.
 
Province of Ontario Neurodevelopmental Disorder Network (POND)
POND is a partner research program of OBI, dedicated to addressing the urgent need for new and better targeted therapies in an effort to improve the long-term outcomes for children with a neurodevelopmental disorder. POND clinicians and patient advisory committee volunteers are helping to support this process by serving on the steering group.
 
The James Lind Alliance
The James Lind Alliance is a UK-based non-profit coordinated by the National Institute of Health Research (www.nihr.ac.uk). Its aim is to provide an infrastructure and process to help patients and clinicians work together to agree which are the most important treatment questions affecting their particular interest in order to influence the prioritisation of future research. The study will be conducted using the methodology set out by the James Lind Alliance. One of their independent advisors will ensure the process is fair, transparent, and representative of each group involved.