EyeCancerBIG will allow our research community to focus its attention on innovation, diagnosis and treatment.
It will enable multicenter, international cooperation for research and patient care.
However this must be a community effort: “we must be the change you want to see in the world” - Ghandi
Why duplicate what is being done well by others. This is both expensive and wasteful. Working together, each doctor can bring their particular expertise to a cooperative effort in the best interest of each patient.
Eye Cancer BIG Provides:
- A set of commonly defined and shared data elements and standards. A common “eye cancer” language will allow us to share (add) our data together, creating larger more significant studies. Done: SEE The AJCC-UICC Task Force
- An interoperable infrastructure within which researchers collaborate. Using software/EMRs that are the same, or can communicate with each others systems, “open source,” will allow for data exchange.
- Analytical tools for information related to cancer research and care. Open source, shared software tools and information will save both time an money.
Cooperative Research Provides:
- Integrated information (pooled data) from a wide range of sources. Instead of our current standard of reporting small, single center case series; we will be able to pool our experience to find statistically significant trends.
- Better information for eye cancer physicians and their patients. We will be able to collect the numbers of patient experiences required to find biomarkers for metastatic disease, to catch ineffective treatments before too many patients are treated and demonstrate how new and better treatments are working.
- Improved decision making and standards of care. The ability to examine how thousands of eye cancer patients were diagnosed, evaluated for metastatic disease and treated will allow us sufficient numbers to evaluate and create new methods of diagnosis and treatment.
This is why Eye Cancer Big is so important
Eye cancers are rare diseases. Therefore, we need to be able to pool our experience (data) in order to determine the best methods to diagnose, treat and follow our patients for metastatic disease (and local recurrence).
To Get Started:
- We agreed to the modified caBIG Principles (see below).
- We have started to divide and conquer, by organizing into working groups. Each of us has decided what we can bring to this effort.
- We have defined our interim goals, realizing this will always be a work in progress.
- We are reaching out to the ophthalmic oncology community to help shape and create this project.
- This is a legacy project. We will start the process, but it will continually be required to grow to keep up with our evolving medical field.
Open Access: Our bioinformatics grid should be open to the entire participating community, enabling access tools, data, and infrastructure for our community.
Open Development: Any software development projects assigned to any participant will incorporate opportunities for our community for periodic review for group participation in its development.
Open Source: Like caBig, any software developed by eyecaBig must be open source. This means it will promote the use of existing code, optimize research dollars spent and promote participation of both software and hardware industries.
Network: We will form a network of eye cancer centers for the purpose of sharing computing and data resources. Though we may share tools and data, each center maintains their absolute right to control their data and research specimens.