This seems like a monumental task, but the NCI's Childhood Cancer Data Initiative (CCDI) has been leading these exact efforts – with incredible progress made already in just five years.
The new era of cancer research is marked by rapid digitization and smart use of modern technology to Maximize Data Utility to yield important insights and for the benefit of patients. This is especially important for young people with rare, hard-to-treat cancers and their families who lack resources or knowledge ( Eliminate Inequities) and thus face a dire prognosis because we simply do not have enough evidence to Deliver Optimal Care. How do we Develop Effective Treatments? We must Engage Every Person and learn from every single child, adolescent, and young adult in this nation with a cancer diagnosis, to help others like them. This seems like a monumental task, but the NCI's Childhood Cancer Data Initiative (CCDI) has been leading these exact efforts – with incredible progress made already in just five years. As an expert in the extremely rare disease renal medullary carcinoma (RMC), which mostly affects young people, I have firsthand experience seeing the transformational impact on this community through basic science discovery, translational science, clinical research, advocacy, and community engagement. Up until a few years ago, RMC was a relatively unknown cancer, but RMC is now included in the CCDI data ecosystem, and we are making strides toward the goal to Develop Effective Treatments. We need to create similar improvements for other rare cancers affecting children, adolescents, and young adults. What it takes is a collaborative, multidisciplinary effort and health care providers engaging with patients, their families, and advocates to participate in research – if we do this at scale, we can transform more rare cancers to become manageable diseases.