The Ultimate #ThrowbackThursday

We were just looking for a document in our Google drive, and stumbled across this document from 2013. It had kind of a vague name, so we opened it to see what it was. Here’s the time capsule we found:

“Background Story

In September 2010, Richard and Amanda Haddock were introduced to the world of brain cancer when their 16 year old son, David Pearson, was diagnosed with Glioblastoma Multiforme. Thrust into this environment full of information and lacking in answers, they immediately started researching treatments and possible cures. They were met with stories of hope, but not much promise. Throughout the 20 months of David’s battle, they never gave up hope and never stopped looking for a cure. David was treated at four different hospitals and several local clinics. They were alarmed at the lack of communication between treatment facilities, and they became very proactive with getting his records moved between hospitals and clinics.

David was always more concerned with others than himself, so when he passed away in May 2012, they were determined to continue to fight for those with brain cancer. They primarily volunteered with Accelerate Brain Cancer Cure and National Brain Tumor Society, and Amanda is currently serving as the Kansas Lead Advocate for the National Brain Tumor Society. They thought that supporting existing nonprofits would be the most effective way to make a difference in brain cancer research.

In October 2012, they attended meetings in Boston for National Brain Tumor Society. One of the speakers at that conference was Dr. Anna Barker of Arizona State University. She intimated that one of the largest problems researchers face is the lack of accessible data, specifically genomic data. They realized that even though these researchers have access to large institutional resources, those resources aren’t designed to meet the expanding needs of research.

Our society uses “big data” to solve all kinds of diverse issues, including forecasting the weather, determining election strategies and national security to name just a few. We believe that these strategies should be used in order to analyze medical data, including genomic, environmental, and clinical data. By using big data, researchers can begin to see patterns, and make quicker, more informed decisions to further research. Instead of researchers utilizing their own small databases, they will have access to a huge database, where patterns can emerge.

We have discussed these ideas with well-known medical researchers and others to verify that we are doing something new and different, that will further and quicken medical research to solve the riddle of cancer, and so far they have all agreed that this database could change the face of cancer research. However, there are a number of challenges that we will need to address. The complexity of these issues is probably why no one has ever tackled this issue before, but we believe that we are the right team, at the right time, in the right place to make this effort successful.

With ever increasing storage and accessibility technologies, we believe the technology finally exists to build a database that can overcome all of those problems and really make a substantial difference in the war on cancer. By dividing up the tasks to specific challenges, we believe we will best be able to solve these issues. In order to attack this problem from many different, and applicable disciplines, we are assembling a group of people who are experts at what they do.

The Challenge –

Collecting data on cancer patients is not a new idea. Hospitals and institutions have been doing it for decades. There are countless databases housing portions of data all over the world. However, there are a number of problems with this:

Those institutions collecting the data typically only share it with a very select group of researchers;

They have invested their own resources in collecting the data, so they want to keep the data for themselves;

They have no mechanism to share the data on a national or global scale

The data they collect is inherently fragmented because it is collected with a specific purpose in mind. For example, they may store data only for brain cancer tumor research without regard to environmental factors;

The data collection process is cumbersome, causing an estimated 15% of patients to miss out on trials because the application is never completed.

It is important to note that we are not asking researchers to share their research, but instead only asking them to share their raw data. Researchers continue to own their research, and their intellectual property, but they will have a much larger pool of data to pull from so their research moves along much quicker.

Our Solution — Storing the Data

The data must be stored using the right technology in order for it to scale to become a huge database. It also must be tagged and maintained in such a way that will allow researchers to review the data in a meaningful way.

The data must be stored in a highly secure, scalable facility.

We are working with a number of people from in data storage, server and programming specialties. They know how to assemble the fastest, most scalable, and most stable database systems with bleeding edge technology.

Gathering the data

In order to use the data and study it in a meaningful way, the data must be consistent, even when gathered from many different organizations. We will look at the existing standards and use the best of those systems to build a database that will work efficiently for all participating institutions.

We feel it is crucial that the data be gathered by a nonprofit organization like Dragon Master Foundation. This type of data is a vast resource, and great care must be taken to keep it accessible to all qualified researchers. Maintaining the integrity of the data will be of the utmost importance.

We plan to work with closely with other nonprofit organizations who are already funding research to have them require grant recipients to input their data into the Dragon Master Database.

Accessing the data

The data must be accessible to researchers from across the United States and, eventually, the world. Researchers must be able to view relevant data at their computers and analyze differences and similarities in the data in real-time.”

Wow! What a cool find that was! After we wrote this, we connected with the Children’s Brain Tumor Tissue Consortium, and quickly realized that the data platform they were building was the beginnings of what we were planning. It only made sense to join forces with them and push their project forward to save effort, time and expense. From the initial group of four hospitals, the project has grown to more than 15 hospitals in less than 4 years! Some of the accomplishments are:

• Data standards have been agreed to and are in practice.
• Data is open access in the cloud for international sharing.
• Full genomic data is being stored along with tissue samples and clinical records, and it is accessible in real time.
• The data is reviewed and empowered by many medical specialities including neurosurgeons, pathologists, oncologists, and radiologists.
• Collection is beginning on datasets beyond pediatric brain cancer.

We work every day with a sense of urgency, and it often feels like we aren’t moving ahead fast enough. This was a nice reminder of how far we have come in such a short time. Can’t wait to see what it looks like in another 3 1/2 years!