Last month I received a tweet from Amanda Haddock asking for my opinion on her database idea. She dropped me an email describing her project. Please read through her below email as not only do I think it could be one of the most innovative data projects I’ve heard of, but it’s a chance to prove how data can help human kind.
If you’re interested in pursuing this opportunity, email on email@example.com
We are still in London, but I finally slowed down enough to grab my computer for a few minutes. We have a website for the foundation (www.dragonmasterfoundation.org) and you can find our mission statement and some basic info there. I thought I would tell you some of the back story in this email to help you understand why we are doing this and what kind of help we need.
In October 2012, my husband and I were at the National Brain Tumor Conference in Boston. We heard a prominent cancer researcher, Dr. Anna Barker, say that there was a great need for more data storage to compare genomes.
It was a very inspirational moment for us, and we have also decided to form DMF (Dragon Master Foundation) to further support research efforts, especially as it relates to “Big Data”. We enlisted the help of my son’s Neuro-Oncologist from Children’s National Hospital, Dr. Eugene Hwang, who has agreed to serve on our Board of Directors. We have spoken with several other doctors and researchers about the project and they are all very excited about the possibilities.
My husband has been in the computer industry for over 30 years, and I have a background in non-profits. We are passionate about brain cancer because my son lost his battle with GBM at age 18 in 2012. Since the moment he was diagnosed we searched for better treatments and cures, and we became vocal advocates in every forum we could find. Hearing Dr. Barker speak was an “ah ha” moment for us because we saw a way to combine our knowledge and networks to truly make a difference in this fight.
As we understand the problem, there are a lot of consortiums that exist in the medical world. Those small groups work well together and share info as best they can. However, they are limited, both in the size of their groups and on their ability to share data. The data that they share is either housed in multiple different databases or in one that will only hold a subset of data. You can look at genome data or patient clinical data, but rarely at the same time.
We believe that if we build a giant database that can house all of these different data subsets, then researchers will be able to compare large groups of people and patterns will start to emerge. We will need thousands of patients’ data to do this, and we know the technology exists to build a massive, scalable database. If we can build it properly, we have no doubt that researchers the world over will want to use it. We want to fund it completely on a non-profit basis and let similar non-profits use the database for free. That will mean some substantial fundraising, but we believe we have the contacts to get it funded, if we have a solid plan.
I am in great need of some talented individuals to guide us on the data management side of the puzzle. We have a board member who has knowledge of data storage, but his knowledge is limited when it comes to the actual structure of the data. If you could help, or lead us to some people who can help, I would be much obliged. We are all working as volunteers at this time, but we have plans to add staff as soon as a plan and funding are in place.
I probably won’t be on my computer much more until we return to the states, but I’ll be checking Twitter and Facebook periodically. I’d love to hear your thoughts.”