Ailani Myers Accelerating Innovation in Medicine to Cure Kids with Cancer Act

(a) In general. The NCI Director shall carry out the CCDI to collect, generate, standardize, link, and share data with respect to individuals who are diagnosed with cancer as a child, adolescent, or young adult, regardless of the age of the individual on the date such data is collected, regardless of where such individual receives care, in order to improve outcomes for individuals with such cancers, including with respect to prevention, diagnosis, treatment, quality of life, and survivorship.

(b) Components. In carrying out subsection (a), the NCI Director—

(1) shall support, at a minimum—

(A) molecular characterization of pediatric cancers, including through the initiative known as the Molecular Characterization Initiative of the CCDI, and the sharing of the results of such characterization to inform diagnosis and treatment;

(B) the generation, analysis, and sharing of data produced by non-invasive clinically validated technologies, software, and artificial intelligence tools, including molecular testing and functional precision medicine approaches, to inform diagnosis and treatment;

(C) data platforms, catalogs, and tools that enable researchers and clinicians to find, access, integrate, analyze, and share pediatric cancer data, including the network of such platforms and tools known as the CCDI Data Ecosystem;

(D) the collection and study of data on pediatric cancers, including rare pediatric cancers;

(E) the aggregation and linkage of clinical, research, and population-based data for secondary use, including through the registry known as the National Childhood Cancer Registry; and

(F) the development of data standards and infrastructure necessary to carry out subparagraphs (A) through (D); and

(2) may support such other activities as the NCI Director determines appropriate to carry out subsection (a).

(c) Director of the CCDI. The Secretary, on the recommendation of the NCI Director, shall designate a Director of the Childhood Cancer Data Initiative (in this Act referred to as the CCDI Director), who shall—

(1) be an individual with demonstrated scientific expertise in pediatric oncology, biomedical data science, or a related field;

(2) provide scientific and programmatic leadership for the CCDI, including the components described in subsection (b) and the artificial intelligence activities described in section 202;

(3) coordinate the activities of the CCDI with other Federal departments and agencies and with non-Federal partners; and

(4) report to the NCI Director.