Summary
The Childhood Cancer Survivor Study (CCSS) is a multi-institutional research resource evaluating long-term outcomes in childhood cancer survivors, which will be maintained, enhanced, and promoted over the next five years.
What they want
Activities for the next five years include expanding data collection to evaluate physiologic and neurocognitive function with aging, characterizing accelerated aging, and investigating underlying pathophysiology of aging of survivors as they enter into their fourth, fifth, and sixth decades of life. This will involve performing in-home functional performance assessment and specimen collection in a sub-cohort of 1000 survivors to develop a population resource for intervention trials targeting age-related outcomes. The CCSS resource will also be enhanced by facilitating health services research through collection of data to evaluate patient, provider, and health care system factors and their associations with access, quality, and cost of care. To maximize research community access and use, a cloud-based data sharing platform will be leveraged and a data analysis ecosystem with tools for data access, visualization, and analysis of genetic, treatment, and phenotypic/outcome data will be developed. With NCI oversight, CCSS will formulate a comprehensive plan for future expansion to assess late outcomes of novel therapies (immunotherapy, targeted/biologic, proton beam radiation).
Deliverables
- Expanded collection of data to evaluate physiologic and neurocognitive function with aging
- Characterization of accelerated aging
- Investigation of underlying pathophysiology of aging of survivors
- In-home functional performance assessment and specimen collection in a sub-cohort of 1000 survivors
- Facilitation of health services research through data collection
- Leveraging of a cloud-based data sharing platform
- Development of a data analysis ecosystem with tools for data access, visualization, and analysis
- Formulation of a comprehensive plan for future expansion to assess late outcomes of novel therapies
Technical requirements
- Cloud-based data sharing platform
- Data analysis ecosystem with tools for data access, visualization and analysis of genetic, treatment and phenotypic/outcome data