After the top 10: bringing the community priorities to life

It’s been over a year since the final workshop of our neurodevelopmental disorder Priority Setting Partnership (PSP). This seminal moment marks the day when patients, family members, and front-line care providers came together and reached consensus on a top 10 list of research priorities for the research community. While all PSP initiatives culminate in a final workshop, we’ve been working hard to spread the word about the top 10 and address the community’s priorities. We have reached tens of thousands of people through media coverage, presentations, and social media promotion which has been greatly amplified by our partners.

SPREADING THE WORD

Final report

The question of how we got to the top 10 is commonly asked among different members of the community. It is a question we felt compelled to answer and to share the steps and results of the process.  In August we released a report on the Community Priorities for Research on Neurodevelopmental Disorders.  The report provides a step-by-step breakdown of the priority setting process as well as an analysis of the respondent demographics to the survey. It also explains why more research is needed for each priority identified.

Infographic

We’ve spent the past year promoting the top 10 priorities and ensuring that they reach the right audiences.  Following the final workshop, we put together a press release and an infographic of our top 10 research questions and shared it widely through our networks and social media channels.  Download the infographic and share to help continue the conversation about research priorities

I am the target text.

Presentations

Two main audiences we have been trying to reach are researchers studying neurodevelopmental disorders, and organizations that fund this research. Members of the PSP steering committee, POND leads, and OBI presented the top 10 list at international academic conferences. This raised awareness and created interest within the neurodevelopmental disorder research community.

Data release

In parallel with the report, we also released a research database that holds over 1200 original questions that were asked by the community about neurodevelopmental disorders. The database can be accessed by researchers, patients and families. The data includes 1261 questions submitted through a survey, 63 unanswered research questions generated from the original questions, and de-identified respondent demographic data (i.e. type of respondent, associated diagnosis, and age range).

Addressing the priorities

The Province of Ontario Neurodevelopmental Disorder Network (POND) is an integral partner in the neurodevelopmental disorder PSP.  POND’s main goal is to improve treatments and long-term outcomes for people with neurodevelopmental disorders.  The top ten research priorities of the neurodevelopmental community overlap with some of POND’s current research. For example, the top ranked priority of the NDD community is to understand the most effective treatment plans/options for short and long-term benefits.  This is still a difficult question to answer because the cause, or underlying biology, can be different in people with the same diagnosis. POND has developed the first clinical trial network in Canada dedicated towards neurodevelopmental disorders. Clinical, behavioural, and molecular data is collected for every participant in this network. By collecting this data, a unique opportunity to understand the effectiveness of various treatments presents itself.

Here are a few more examples of how POND is addressing some of the top 10 questions posed by the community:

Priority 3: What treatments are effective?

Clinical trials for new treatments are always tested through several phases. Phase I tests initial safety and dosage of a medication.  Phase II tests the first time potential efficacy and  further evaluates safety,  and Phase III is the definitive stage to evaluate whether  an intervention works.  How effective a treatment is (Priority 3) is an important question; POND recently completed a Phase II clinical trial to test the effectiveness of a drug called Tideglusib, a drug previously used for Alzheimer’s disease. Youth with autism treated with the drug showed improvements in social skills as well as other symptoms related to memory, repetitive behaviours, sleep quality and daily living skills.

Priority 7: Treatment precision

Matching people to the right treatment plan is a major goal for POND. By understanding the underlying biology of children and youth with neurodevelopmental disorders, more comprehensive and effective treatment plans can be developed and administered. All the clinical trials include genetic and imaging information to further our understanding of which intervention is right for whom. In fact, POND is also using patient skin and blood samples to create cells lines that can be used for drug screening and predict a patient’s response to treatment.

Priority 9: Reducing anxiety

One major undertaking to address anxiety has been through the development of a technological intervention. POND researchers have developed, patented and clinically validated an anxiety meter algorithm that uses heart rate to determine a patient’s anxiety level. This technology is extremely useful in helping both the individual and their care team identify and manage anxiety. Recently, POND partnered with Awake Labs to integrate this technology with their wearable platforms and test its use in real-world settings. This pilot will be the first step towards making this empowering tool more accessible to those who need it.

We have made some progress over the last year to promote the priorities and begin addressing them through research. But there is more work needed to ensure the voice of the community is reflected in the questions being asked.

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