To collect data of any kind from the pediatric cancer community is as easy as asking for it. This community is anxious for innovation toward kinder treatments, and they are ready to help. The next step is to make it easy to do. Engage nonprofit organizations who share research, are engaged with the wider community, are trusted and can activate their members to participate. Commit to updating participants on the impact ...more »
The initiative focuses on the critical need to collect, analyze, and share data to address the burden of childhood cancer. This initiative builds on research conducted across the United States and internationally to help children, adolescents, and young adults.
Answer one or more of the following questions in your response:
- What is the best way to engage researchers and participant communities?
- What is the most important part of this initiative for you?
Building a global social media forum for creative communication using art, poetry, film, music, patient narratives etc functions as a bridge for engagement between researchers and community participants in collaborating and contributing ideas, perspectives and insights. My experience with this initiative on facebook through my page Cancer Research Updates reveals that individuals and the public are eager to contribute ...more »
Remove barriers to caregiver access to disease- and treatment-related primary literature. With an improved public literacy and exposure to STEM (Science, Technology, Engineering, and Math) education programs, improved public access to primary data and summaries is important. Parents need the ability to advocate for their child through data-driven inquiry, presently most scientific and medical literature is out of reach ...more »
Challenge competitions provide a viable method to incentivize the engagement of talented individuals and teams toward the development, validation and benchmarking of innovative solutions (tools), while making great use of shared reference data. Although the goal of a challenge may be developmental, the process of implementation and execution of the challenge can help address issues in data quality, access, and data standards, ...more »