Background: Dysgraphia, specific learning disability in written expression, is a developmental learning disability affecting 10-30% of children, yet many of the interventions and accommodations being used for management have not been well studied or formally compared. There is a significant unmet need to build, engage, and educate the dysgraphia community on patient-centered research practices and to prioritize research on the most important questions for people diagnosed and their families to improve health outcomes.
Proposed Solution to the Problem: Growing and educating the community, identifying the most meaningful research topics, and building connections will lead to future research studies that will improve health outcomes for people with learning disabilities of written expression.
- Build a community of trained and activated advocates to advise on and participate in patient-centered outcomes research/ comparative clinical effectiveness research (PCOR/CER) studies while connecting them with researchers
- Identify promising practices for engaging parents, guardians, and other caregivers of students with learning disabilities
- Develop a list of prioritized research topics that could improve health outcomes for those with learning disabilities of written expression
Activities: The project team will grow and engage the entire dysgraphia community with a special focus on parents and caregivers of students with learning disabilities (the most activated stakeholders who have significant decision-making influence) by building off a prior PCORI-funded engagement tool, the Virtual Community Engagement Tip Sheets focused on engaging mothers in research. Through community feedback, the project team will adapt this tool to describe promising practices for engaging parents, guardians, and other caregivers of children with learning disabilities. The project team will educate all stakeholders about collaborative partnership in research and PCOR/CER. In year two, the project team will develop a prioritized list of research topics that are the most important and meaningful for the community.
Projected Outcomes and Outputs: During the project period, the team will grow and engage the stakeholder community and increase research interest and readiness. Outputs will include an adapted community engagement tool with promising practices for engaging caregivers of students with learning disabilities and a prioritized list of research topics developed with multi-stakeholder input. The project will enable the community to be activated to participate meaningfully in new PCOR/CER studies after the project period and, ultimately, improve health outcomes for those living with learning disabilities in written expression.
Patient and Stakeholder Engagement Plan: People diagnosed with dysgraphia and their loved ones will be included in all aspects of this project. The Stakeholder Advisory Board includes those affected, parents, clinicians, educators, and scientists. Parents, guardians, and caregivers will participate in surveys and focus groups about research engagement. The project team will ask all community members about future research topics that are meaningful for them. Free educational PCOR/CER trainings will be provided for the entire community.
Project Collaborators: Joanne Nicholson, PhD, of Brandeis University provided permission to utilize and adapt engagement tools from a prior project. Project collaborators include scientists from Johns Hopkins University and Children’s Hospital of Pennsylvania, as well as the President of the Learning Disabilities Association of America (LDA) Virginia Chapter. LDA will help with raising project awareness and results dissemination.