Dragon Master Initiative

Our Goals

• Develop a large-scale database that will transcend existing consortiums and databases and will house molecular, genetic, clinical and environmental data. Further, the database will be built for high-volume, high-velocity data processing taking advantage of the latest technologies while allowing for future growth and advancements. The initial primary focus was brain tumors, starting with data collection in the pediatric population and then expanding into adults. The infrastructure has grown to include some other types of cancer and birth defect data.

• Reward qualified researchers and institutions who share data with the database by giving them free access to the database, leveraging existing grant funding, and creating new grants through fundraising efforts.

• Provide opportunities for researchers to work with each other and with other experts outside of their field of expertise to expand the horizons of research by pushing their experiences outside the box.

• Provide a system for tracking patients from one clinical study and/or hospital to the next and give researchers better long-term data on deaths and survivors.

We have invested our time and financial resources in Cavatica.org, a robust, web-based research infrastructure. While it is operational, there are still many features we have on the roadmap to make this an even greater tool for research. We also take every opportunity to work closely with the National Institutes of Health and the National Cancer Institute to develop policies and resources that will see us into the future of disease research. Developing standards and pushing the boundaries on data access are pivotal points that we continuously work on to make sure that data is not only accessible to clinicians and researchers but also the patients themselves.

We have proven to be an effective voice for patients in this ever evolving world of data sharing and access. We were recognized by the Obama White House with the Champion of Change Award for Precision Medicine. We serve on working groups nationally that deal with subjects like shared cloud-based infrastructure and patient access to data.

We helped launch Cavatica.org and have seen the number of institutions willing to share data grow from 4 to 17. We have also been instrumental in adding access to new datasets outside pediatric brain tumors, lending a more diverse landscape by which to learn about disease.

The initial focus for the infrastructure was for genomic research, but there are plans to make this a more accessible resource for both clinicians and patients.