- There are a total of 48 attendees registered including support and planning staff. The group is split evenly among members of the community and clinician/researchers.
- There will be a conference call/screen share option to attend remotely in place of live streaming which was too cost prohibitive.
- After culling the 400 ideas generated from the surveys and voting, there emerged a top 50 list in each of the two main areas of:
- Important research questions
- Most important improvements to care and treatment.
From this process, similar themes were discovered. Some of the most common general themes include (in alphabetical order):
- Advocacy and Education (working to change knowledge of professionals, patients and caregivers or change policy that affect a broad group of people such as access to care, facilities or equipment)
- Best Practices (guideline development, “algorithms” for how to treat different types of CP, etc.)
- Comparative Effectiveness Research (of interventions including surgeries, medications, therapies, orthotics, therapy dosages, etc.)
- Complementary and Alternative Medicine
- Exercise and Physical Activity
- Increasing Independence
- Measurement Validation and Development
- Mental Health
- Understanding Aging
We plan to put this list of themes with their underlying questions out for another round of voting to further prioritize the research agenda. We will not use Codigital for this step but a more traditional survey platform. The goal will be to understand the priority of these higher level themes of research questions and care/treatment improvements. This next step should allow us to arrive at the workshop with the potential to make the most progress on setting a patient-centered research agenda.
Thanks for being engaged in Research CP. We look forward to what the next steps and workshop will do to bring our process to a close with the ultimate goal of improving the lives of those who have cerebral palsy.