By Jaime M. Guidry Auvil, Ph.D.
Director, Office of Data Sharing
Center for Biomedical Informatics and Information Technology
Dr. Jaime M. Guidry Auvil serves as the director of the newly-launched NCI Office of Data Sharing (ODS). Headquartered at the Center for Biomedical Informatics and Information Technology, ODS is creating a comprehensive data sharing vision and strategy for NCI and the cancer research community. Since joining NCI, Jaime has coordinated additional programmatic and data sharing most extensively for the pediatric cancer genomics TARGET (Therapeutically Applicable Research to Generate Effective Treatments) initiative in addition to serving as an NCI representative on the leadership and working group teams to provide guidance for the Gabriella Miller Kids First Pediatric Research Program through the NIH Office of the Director.
Though September draws to a close, the childhood cancer research and participant communities continue to don their “gold” ribbons to raise awareness of cancers that affect young patients. The NCI Office of Data Sharing (ODS) will carry forward the warm spirit, commitment and passion of Childhood Cancer Awareness month into a new season by setting a “gold” standard of equitable data sharing principles for pediatric data across NCI and NIH data repositories.
Effective NIH data sharing practices rely on appropriate identification, adoption, and accrediting of good data management and broad, equitable sharing practices and further encourages data sharing consistent with the FAIR (Findable, Accessible, Interoperable, and Reusable) Data Principles. In its role, ODS advocates for the proper balance of these broad data sharing practices and policies while respecting the rights of patients and their families to participate in and benefit from research. ODS supports multiple NCI and NIH pediatric cancer initiatives, including the Gabriella Miller Kids First Pediatric Research Program (Kids First), in part through overseeing access to sensitive cancer data and metadata, and further ensuring these meet NIH data sharing guidelines and policies.
Kids First is in fact a “gold standard” trans-NIH research initiative which supports the broad, equitable access and analyses of genomic data and metadata to be generated from more than 30,000 childhood cancer and structural birth defect samples. The newly launched Gabriella Miller Kids First Data Resource Center (DRC) is a comprehensive and interactive online data hub that facilitates data use for researchers, clinicians, and patients surrounding genetic, familial associations with a variety of hematologic and solid tumors that include:
- Acute lymphoblastic leukemia
- Hodgkin’s and non-Hodgkin’s lymphomas
- Ewing’s sarcoma (currently available through the DRC)
- Treatment-resistant pediatric osteosarcoma
- Central nervous system (CNS) and non-CNS solid tumors
Tumor and normal tissue samples from patients, and those from affected and non-affected relatives where available, are sequenced to explore genetic susceptibility and heritable contributions to childhood disease. The Kids First cancer data sets include whole genome sequencing of tumor and germline samples from patients and family members, as well as transcriptome profiling by RNA sequencing and deep whole exome sequencing for some tumor samples.
Sequence data generated for Kids First cancer cohorts are maintained within controlled-tier levels and require approval from a NIH Data Access Committee (DAC) to access the data. This Summer, the Kids First DAC was centralized at NCI to maximize efficiency and consistency of data access approvals to controlled-tier level data. The Kids First DAC reviews research requests for controlled-access datasets to ensure that proposed data uses align to the data use limitations allowed through patient consent and conform to NIH data sharing policies and guidelines. This improved process will allow researchers greater access to valuable pediatric data and demonstrates NCI’s commitment to data sharing.
The Gabriella Miller Kids First Pediatric Research Program seeks to improve the understanding of serious childhood afflictions (cancers and structural birth defects) through broad and equitable sharing of pediatric data and metadata. To continue this momentum, for patients of all ages, we must remember the importance of building a data sharing landscape that recognizes the critical roles both the research and participant communities play in combatting disease. We, at ODS, look forward to working with these communities, learning their pain points, and refining our data practices to truly set the “gold standard” in childhood cancer data sharing.
For a demonstration of the DRC portal, please register for the webinar on Wednesday, September 26, from 10 a.m. – 5:00 p.m. EDT. For more information, visit the Gabriella Miller Kids First Pediatric Research Program coordinated through the NIH Common Fund. To stay in touch with the Office of Data Sharing, follow #NCIODS or email firstname.lastname@example.org.