3 Changes Coming To Clinical Trials

Lessons Learned, Uncategorized

Clinical Trial Changes

If you have a “rare” cancer that doesn’t have a great standard of care, chances are you will be offered a clinical trial. To the general public (which is who we all are before that diagnosis is presented) clinical trials sound like a scary thing. To a cancer patient being told there is no cure, a clinical trial is a lifeline being tossed in a stormy sea. IF you catch it, it MIGHT help save your life.

So how do you pick a clinical trial? Well, first you have to find one that you qualify for. We’re going to assume that you have a doctor who is really helping you and is presenting you with some choices. So you have a couple of clinical trials and the “standard of care” to choose from. How do you decide? Right now, it’s a guessing game, but all of that will be changing rapidly as technology and open access data become more commonplace in the process.

  1. You will have more concrete data to help make decisions. I have seen some pretty impressive technology being developed by Clalit Research Institute in Israel that will help a doctor walk through a list of weighted questions with a patient that will help them make this difficult decision. (That program was developed using data made available from a clinical trial, and as more data becomes open access, I think we can expect to see more applications like this developed.) Each patient will be able to rate a list of possible side effects and based on their feedback, an algorithm will provide guidance on particular trials.
  2. You will know more about what “successful” patients look like. As data begins to become collected in one place, it is easier to compare patients on a genomic level. Researchers will be able to compile profiles of successful patients to help determine who has the greatest chance of success on a trial. My son participated in a clinical trial where one patient was doing really well. We had no idea if David would have the same results because there was very little data to tell us why the first patient was successful.
  3. The system will start to find you. Right now, clinical trials are found largely by patients and doctors sifting through websites like clinicaltrials.gov to find possible trials. In the future, doctors will enter your information into the computer, and then you will be pre-qualified based on your exact diagnosis and personal information. The computer will then present a list of potential trials that you can choose from.

This all might sound a little too good to be true, but the fact is, the infrastructure is already in place. Cavatica.org is an open access research platform that Dragon Master Foundation and others have been funding for more than three years now. It houses a patient’s full genome and biosamples from the patient, and sometimes the patient’s parents. It also links to the patient’s clinical records so we can have a longitudinal view of that patient. I believe it is the single most complete picture of a patient you can get, and we are working hard to make it available to everyone. (At the moment, it is largely working with pediatric brain cancer data, but the platform is built to expand as funding becomes available.)

Data like this can take a lot of the fear and guessing out of treatment, and it should lead us to more successful treatments and cures. We are on the cusp of a meaningful shift in cancer care, and I’m excited for this to start really impacting patients lives.

What is Your Field of Dreams?

Uncategorized

Field of DreamsIt occurred to me today that I don’t really get to talk to our supporters enough. Working on Dragon Master Foundation has turned into a full-time volunteer job for me, and most of the time, my head is down on one project or another. The work doesn’t stop coming, but I am so thankful to be in this position – doing this on behalf of cancer warriors. I wanted to stop for just a moment today, and let you know what your support has made possible this week. (And yes, it is only Tuesday!)

You helped give encouragement to a researcher who has developed a program around brain tumor tissue donation. We will be sharing a lot of his work over the next few months, but sometimes, they just need to hear that their work matters. As he told me about the extremely sacrificial gift he works with in his lab, I could hear the emotion in his voice. Tears gathered in my own eyes as I thought about the sacrifice our family has made, and I hope you all know that giving families this final way to make a difference is a truly valuable gift.

You helped gather feedback on the recently launched research platform, Cavatica, from a man who has dedicated most of his nearly 70 years on this planet to cancer research. He spoke with wonder in his voice of the things he is able to accomplish with this technology – things he never thought possible!

You helped give hope to a group of innovators who are developing a big data algorithm that can make treatment recommendations based on a patient’s DNA. They had been struggling to find the amount of data needed to test their theories, and now they have a source for their work.

These were conversations filled with hope, and that is what we are funding. When we started Dragon Master Foundation, it was because we had some audacious ideas about how to help researchers. Less than four years in, we have accomplished so many of the goals we set out to achieve. There is a real-time, open access platform where hospitals can share genomic and patient data. As I type, there are more than 15 hospitals sharing that data with agreed upon data standards. That alone is more than most people thought would be possible. Like the movie Field of Dreams, this is a real life “if you build it they will come” situation.

Which leads me to the best kind of problem to have. We can’t seem to fund the progress fast enough. We have delivered a tool to the nation’s top doctors who are eager to use it, but we need to fund the data to go inside. Putting the data into Cavatica means truly empowering precision medicine. It means we will be on our way to saving lives. If you’ve ever faced cancer, for yourself or a loved one, then you know that today matters.

There’s another great quote in Field of Dreams that applies to this situation. Archie Graham says, “We just don’t recognize life’s most significant moments while they’re happening. Back then I thought, “Well, there’ll be other days”. I didn’t realize that that was the only day.” It’s easy to let days slip by without taking action, but one day, there won’t be any more chances. We have to seize the opportunity now! Not because there won’t still be data to add tomorrow, but because there are lives being lost today. Every day is life or death to someone. So let’s work with urgency now to save more lives tomorrow.

 

Who’s Really the Enemy Here?

David's Journey, Dragon Master Foundation, Uncategorized

hawking

When someone you love is diagnosed with a terminal illness, the gut reaction is to attack that disease. That’s certainly how we felt when David was diagnosed, and our initial efforts were focused on ending Glioblastoma (GBM) because that was the type of tumor David had. We were not involved in the world of research, and that seemed the most logical  course of action to us. To strike back at the thing that struck at us.

We thought we knew how to help. As we learned more, we realized that we needed to help find cures for brain cancer as a group of cancers because there is a lot that can be learned by studying them together. We also felt like we needed to help that community as a whole because they are so underserved. A broader goal brought us into contact with many more researchers, and many more ideas.

We were energized by some of the sharpest minds in research, and realized that the kind of analytics we wanted to do are really best empowered by studying all types of cancer, and even other diseases, in tandem. The most cutting-edge research points to cancer being mutations in genes and studying the mutations, regardless of the starting point in the body, is leading to new research pathways.
Cancer is a disease that has plagued humanity for generations. In all that time, we have mostly dealt with it as a disease of a particular body part. We now know that it is much more complicated than that, and we need to empower researchers to follow many pathways.
David had a bright and curious mind. For him, helping researchers was never really about helping himself. It was always about helping other people and solving the puzzle of cancer. Brain cancer is the beast that took David from us, and we would love to see that disease wiped out for good. But what if the answer to curing brain cancer lies in pancreatic cancer research? What if the answers we seek lie in the cure for  fibrodysplasia ossificans progressive? (That’s a super interesting rare disease that has been connected to the brain cancer DIPG. You can learn more about that here.)
It’s human nature to strike back at the thing that hits you. But do we really even know what that thing is? Dragon Master Foundation is focused on putting all of a patient’s information into one giant research platform. It’s a database, yes, but it is also a place where researchers can collaborate and gain access to biosamples. It has a patient’s full genomic data, but it also has their treatment path over time. It gives us a more complete picture of what is going on with the patient and what treatments are successful. It can help us understand why certain patients do well on a clinical trial and some don’t. And possibly most important, it looks at patients across many disease types to compare and contrast things like gene mutations. Instead of having one small group of researchers working on a problem, this platform makes it possible for any researcher, anywhere on the planet, to work on high quality data to help find cures.
Tomorrow is #GivingTuesday. It’s a time when people around the world put a few of their hard-earned dollars into the hands of a charity that they hope can change the world. I’m convinced that Dragon Master Foundation is one of the most deserving places you could make your donation. Here are a few of the reasons why:
  • No one at Dragon Master Foundation gets paid.
  • We direct all of our research dollars directly into this one project that is already speeding research. (One doctor said that it shaved a month and a half off of his typical tissue request workflow!)
  • This project has the potential to help patients with cancer as well as a host of other medical conditions.
  • Through this portal, research can be done on both adult and pediatric populations.
  • It was listed as part of Vice President Biden’s Cancer Moonshot Fact Sheet.
  • It is open access – meaning researchers don’t have to be part of a special consortium to access the data.
  • It is cloud based – meaning the researchers don’t have to download petabytes of data that can take days to acquire. It also means they are not dependent on their hospital’s computational power because they can do their work directly in the web.
Dragon Master Foundation isn’t the only foundation funding this. As of right now, there are 13 hospitals and more than twice as many foundations putting resources toward this project. However, many of them have a specific disease focus where they direct their resources. By donating through Dragon Master Foundation, you can be assured that your donation will go to building the infrastructure that will help all patients, all researchers. This isn’t just a gift to help researchers. This is a gift for mankind. This #GivingTuesday, you can  be part of the generation that changes the world.

One Small Gesture CAN Change the World

Dragon Master Foundation, Uncategorized

Today is the halfway point in the Revlon Love is On Challenge. We have raised over $21,000, which far exceeds any online fundraising we have done for Dragon Master Foundation in the past. It shows that we are growing as a foundation and that people are starting to really understand and support our mission. I really wanted us to be at $50,000 by the end of the day today, though. Hitting $50,000 today would mean that we have a guaranteed pitch meeting with Revlon to promote Cavatica — an open access data platform that will dramatically improve the cancer research process. We have until midnight. I haven’t given up hope.

My heart may be broken, but I don’t want yours to be. 

There are literally thousands of people who have the potential to read this message. If each of them donated only $10, we would far exceed our goal. There are many times in this life that we are helpless. We sit and watch as good people die from a disease that seems unstoppable. I’m here to tell you that it is stoppable. We are seeing breakthroughs with precision medicine efforts, but if we want them for everyone we must take action. Precision medicine initiatives are only as good as the data that drives them. You’ve seen the photos. Right now, a family sits with their child knowing there is nothing else to be done. For those of us who have been there, there is nothing we wouldn’t do to keep you from knowing that pain. Wives continue on without their husbands because a nasty beast stole them away right in their prime. Children grow up without mothers because cancer stole them from their family.

This project has the potential to help all of mankind. I don’t expect you to devote your life to it. I know you have jobs and kids and other responsibilities. All I’m asking is that you realize what an amazing opportunity this could be for all of us, and maybe skip that extra meal out this week. Donate two days worth of Starbucks to our cause — TODAY. I promise you we will make the very most out of that donation.

You can donate here: https://www.crowdrise.com/DragonMasterFoundation-Revlon2016

In case “warm fuzzies” aren’t enough

Dragon Master Foundation

We are a few days into the Revlon “Love Is On” Campaign, and I’m super proud of our effort so far. For such a new foundation, we are really holding our own! I know a lot of our supporters are not on Facebook, so I wanted to do an update here on what you can get by helping Dragon Master Foundation in our quest to win a million dollars. You know, in case the warm fuzzies aren’t enough. 🙂

We announced that we will have a special “thank you” bundle for everyone who donates more than $150, and today, I’m going to tell you what that bundle includes:

  1. A Hope, Love, Cure, End Cancer Vinyl Cling  – These are a great way to show that you support cancer research! You can put them on your car, on a dorm window, or the entrance to your business. Show the world you care!

    screen-shot-2016-09-15-at-9-28-31-am

    T-shirt and vinyl cling design

  2. A Snazzy Awareness T-shirt  – Ok, I know “snazzy” isn’t very descriptive, but the t-shirt will be changing each week. The first week’s shirt is a yellow gold with a grey imprint of our Hope, Love, Cure, End cancer design. It’s only available until Tuesday, September 20th, so be on the lookout for the next shirt after that. (Side note: If you donate more than $150 each week of the campaign, you get a new bundle each week!!)screen-shot-2016-09-19-at-8-46-37-am
  3. A CanPlan Planner – These are an awesome resource for people going through cancer treatment! It’s a leather hardcover design that just feels good to carry around, and the patient or caregiver that has it will feel better because they will have the information they need at their fingertips. This beautiful resource is available for purchase for $29.95 on their website (http://store.mycanplan.com/) or you can make a donation and get one as part of your bundle!insert_dmf_front
  4. A Two Pack of Dragon Snappets – This creative toy is a wonderful gift for kids battling cancer – or kids who aren’t battling cancer! Constructed of paper and rubber bands (no scissors or glue needed), the interactive toy lets them make their own dragon hand puppet and then have hours of imaginative fun while the dragon makes a satisfying “snap” sound when you close his mouth. Normally $9.99 (you can purchase extras here) this awesome gift will also be part of your bundle!
  5. The satisfaction of knowing you are making the world a better place. Really, the “stuff” is nice, but when it comes down to it, your donation will be helping us have a chance to talk to Revlon about open access cancer research and the need to break down the research silos that exist. It will be offering hope to patients with rare cancers who are currently told at diagnosis that they are terminal. It will put new and powerful tools into the hands of doctors and scientists who have dedicated their lives to finding cancer cures. That’s the very best gift of all.

You can donate to Dragon Master Foundation for the Love Is On Challenge by going here. You can donate directly to the foundation, or choose one of the team members who are helping us. Better yet, sign up to be on the team and help us spread the word! We need to be in the top 10 group by tomorrow to win the next challenge grant of $5,000, so every little bit today REALLY helps!

 

 

What A Rollercoaster!

Dragon Master Foundation

Like a rollercoaster as the last car eases over the top of the hill, we are hurtling forward after what felt like slow movement. The projects that we have been working on for the last three years are picking up speed. We have said all along that the way to change cancer research is through greater collaboration, and that message was loud and clear at this month’s Cancer Moonshot Summit at Howard University. There was an extremely diverse group of cancer research advocates brought together to hear Vice President Biden’s ideas and then work together to share our own ideas for how to bring about 10 years worth of change in the next five years. I think that idea might have scared some people, but we have already seen amazing advances using the Cavatica platform, so we know that kind of rapid improvement is possible. 

I know that there were many events held around the country, and we even hosted an event at WSU in Wichita, but many of you may not have had a chance to really see what happened during the day of the Summit. I wanted to give you my perspective on the day, and I hope it fills you with the kind of hope I have for the future of cancer and disease research. 

We started the morning with American icon Carol Burnett. She was delightful, as always, and the fact that she took the time to be there with us spoke volumes about how amazing this effort really is. Vice President Biden shared some of his frustration with us over costs and lack of progress, and we learned about some of the goals of the Cancer Moonshot initiative from Dr. Danielle Carnival, Chief of Staff and Senior Policy Director of the Cancer Moonshot Task Force. 

There were several other speakers, all of whom underscored the need for this important gathering and continuing effort by the community. We broke into work sessions for the morning, and I was placed in the “Solving the Technical Challenges to Unleash the Power of Data” group. That was no big surprise! 

I was incredibly humbled by the people in my workgroup. From industry veterans who have been working on making genomic data available like Warren Kibbe to bright, young innovators like Daniel Wagner who are challenging the way we look at and access the data. It was a fast-paced discussion that resulted in some great ideas.

We all returned to the general session for lunch where we could share ideas in a less-formatted way. I had the great pleasure of sitting with Dr. Charles Powell from the Icahn School of Medicine at Mount Sinai. Our discussions covered everything from rare forms of Mesothelioma to the latest imaging technologies. There’s nothing quite like watching a doctor get a look at new technology that will help him do his job more effectively, and I had the pleasure of watching that at lunch. It is simply amazing what we are gaining access to through new technologies. We got a great look at how Siemen’s is turning analog scans into digital data that can be used for comparative analytics. That will be great in Cavatica!

After lunch, we heard some great speakers who spoke about collaboration. I think some of these were available on the live broadcasts, and they are available for viewing here:

Then we were off to our afternoon workgroup sessions. My session was on “Data: To What End?” and our insightful speaker to start the session was none other than David Agus. 

IMG_0598

We talked about existing collaborations, and I finally had a chance to mention Cavatica, the sharing platform we have been funding. The attendees seemed a little stunned that we already have 10 hospitals not only sharing digital data, but biosamples as well. There was still some sentiment among event attendees that it would be hard to get scientists to share their pre-publication data, but the doctors at the 10 Cavatica institutions are truly putting children, and indeed all humans, first. This level of collaboration may be unprecedented, but it is the wave of the future and that was evident from the number of people looking to learn more about our platform. I was so honored to be able to share about the many hospitals and nonprofits who have come together to build this amazing resource. I believe it could be the model by which all future research is done. 

After a pretty exhilarating working group, we returned to the main hall to hear Greg Simon, Executive Director of the Cancer Moonshot. Dr. Adam Resnick and I got to speak with him for a few minutes after the event was over, and I felt like he was truly trying to pull together all the resources he can to make the end of cancer a reality in our lifetime. 

IMG_0654

The event ended with Dr. Biden and the VP Biden speaking to the crowd and asking for a prolonged commitment to working together for cures. I believe we have that commitment from everyone that attended this important event. 

We returned home to find out that we have been accepted into the Revlon “Love Is On” Challenge. This is an amazing opportunity, not only to raise much needed funding for the research platform, but also to raise awareness for the platform and explain how it can improve research around the world. You’ll be hearing a lot from us about this, but there are two things you can do right now to make a huge difference:

  1. Sign up for our Thunderclap to announce the contest. We’ve used this before, and it is quick and easy. You give one-time permission to Thunderclap to send out a message on our behalf. The message will ask people to support Dragon Master Foundation in the “Love Is On” Challenge. Sign up here: http://thndr.me/ukBgiJ
  2. Sign up as a fundraiser for the “Love Is On” Challenge. This will give you a fundraising page of your own, which will allow you to easily share the challenge with your friends and family. We are asking that everyone make a minimum $10 donation because that is what is needed to count for the contest. Those $10 donations could easily be turned into ONE MILLION DOLLARS if we win the contest. We’ve won social media contests like this before, so we know with your help we can do it again.

 

Where Does the Money Go?

Dragon Master Foundation, Uncategorized

IMG_7501

Starting a foundation is expensive. We spent thousands of our own dollars to get the foundation up and running, and even now, our board members regularly pay for things out of their own pockets so that the expense doesn’t fall to the foundation. To date, we have donated over $100,000 toward building this shared database. Our board and our supporters have generously helped us get to where we are today, and we have an exciting opportunity just before us that I thought you might want to help with.

You see, we make connections with people around the world. Telling them about our data sharing project with CBTTC and asking them to help. Our foundation has brought many new voices to the conversation, and that conversation is about to happen in person with at least 15 hospitals and foundations. It’s an expense for the foundation, and we would love your help in sending some of our board members to participate in this momentous event. We need to fly to New Orleans and spend a couple of nights in a hotel. The conference is paying for some of the meals, and typically our board members pay for their own meals while traveling, so that isn’t part of the expense. We are also only covering part of the cost of their flight because we want them to all have a personal commitment to the event. We will have a full day of meetings followed by an evening of discussion. We are taking a videographer with us who can help us share the story of what happens with all of you. 

If you believe that our collaborations are making a difference, please help us get our board to this conference. Every donation to this campaign will be used to further the conversation about the importance of sharing data between hospitals. We’d like to take some branded items with us to help folks remember who we are and be able to reach back out to us as they have more questions after the event. Here’s a breakdown of what I think the expenses will be:

Promotional items $500

Expenses per attendee:

Flights $500

Hotel $480

We have eight people who will take time off work to attend this event with us, so that would be $7,840, plus the $500, for a total of $8,340. That’s not including ticket fees, etc, so I’m setting the goal at $9,000. 

We’ve talked a lot about open access. You hear more and more about the patient experience on the news. All of those words are good, but for the most part, the world is still segregated into the medical community and the rest of the world. This conference is changing that. We will have a room full of passionate advocates sitting side-by-side with the doctors and researchers who need our help. We are building a global team to fight this war on cancer. 

Want to help? We value every contribution! You can see our individual fundraisers and make a donation here.

(Please note that they are just now setting up their pages, so there may be a few more pages appearing over the next few days.)

Imagine

David's Journey, Dragon Master Foundation

IMG_3572Imagine for a moment that you were diagnosed with cancer. (I pray this is never real for you.) You are sitting with your doctor, and he gives you your treatment options based on what they think might work for you. You’re given the odds based on every other person who has ever had that type of cancer. What would you think?

I have not been diagnosed with cancer, but my son, David, was. As his parent, it was my job (along with his other parents) to choose a course of treatment to give him the best chance at survival and the best quality of life. They told us the odds – that he would probably die within the year. We chose to believe in a better outcome, and so did David. We studied everything we could get our hands on to improve his odds. And we did, but only for a while. David died 20 months after being diagnosed.

His odds were based on every other person who ever had that disease. He should have lived longer because he was young – just 16 at diagnosis. But I know others who were much older and lived much longer. Why? If you were diagnosed, wouldn’t you want to know why some people live longer?

In essence, that is what Dragon Master Foundation is trying to do. We are helping fund a database that will help researchers discover why some patients respond well to a drug and why some don’t. The answers are there…in our DNA. The problem is, most hospitals only have access to a relatively small number of patient records. One hospital alone will never accumulate enough data for true “big data” analytics. Because of the multitude of cancer types and subtypes, even most consortiums don’t really have enough data to see the big picture. And yet, you will see and hear about more consortiums formed all the time. More efforts to amass that kind of data.

You might think that we are just one more effort, but let me tell you why we are different. We aren’t just a consortium. Yes, we do have certain hospitals who have agreed to the strict standards for data collection and sharing. But unlike a traditional consortium, the records being collected are available for researchers at other institutions. Virtually anyone with need can access this data. At this point, there are over 1,400 subjects in the database, but that number is growing every day because more people are diagnosed every day.

When a diagnosis comes in your world, do you want statistics based on every other person, or do you want to know what treatment will work for you? Help us build the resource today so that we all have a better chance at survival tomorrow.

P.S.

I am honored to share this picture of Jonny with you all again. You may know that he is on hospice care now. If you would like to send a kind word to his family, you can do so here: https://www.facebook.com/projectteamjonny

White House Champions of Change for Precision Medicine

Uncategorized
The Precision Medicine Champions of Change with Dr. Francis Collins.

The Precision Medicine Champions of Change with NIH Director Francis Collins.

I have always been proud to be an American. I like to think that I’ve done things for the betterment of our country through the years. For more than a decade, I worked with paralyzed veterans, and I like to think I made a positive impact there. It is rare that any of us get any major recognition for our work, but on July 8th, I was invited by the White House to speak about my new passion – cancer research. Along with 8 other Americans, I was recognized for making a positive impact on precision medicine. The award was a great honor, and it was so motivating to be in the room with so many passionate, innovative people!

While the experience is still fresh in my mind, I wanted to share some of it with all of you. As you might imagine, an honor like this was uplifting and also a little intimidating. I mean, the White House! I had been as a visitor, but never as a guest! We had specific times that we were allowed to enter, based on what we were doing that day. I was allowed in early, but the folks with me had times staggered throughout the day that they could enter.

Richard was with two key players in the database effort – Adam Resnick and Jay Storm. I was so glad to have all of them there to keep my thoughts on track. Talking with them is so invigorating! Their clarity of vision and intense desire to help children is so motivating. I wish I could relate their passion to everyone. Being in that environment is like  watching a hot air balloon come to life… Filling and filling until it rises off the ground and soars to its higher purpose. We all have that purpose inside us, and being with others who can help us see our purpose is one of life’s most amazing gifts.

So they were with me in spirit, but I entered the building alone. After a security check, I was in and looking for our meeting room. The Champions gathered waiting for our turn to be filmed for a quick segment on precision medicine. Not sure when that will be available for viewing, but it was a good way to start the day.

After that, we went into round table discussions on various aspects of precision medicine. Richard, Adam, and Jay were all in the building in time to participate in these sessions. There was valuable information shared, but the sessions were too short to really hear from all the participants. There were many people in the room that I wanted to hear more from. I’m hoping that we will have a chance to connect after everyone returns to their normal lives.

We had a quick lunch break but the guys and I had gotten separated. Luckily, that is about the time that Kevin Beezhold arrived. Kevin is one of the people who nominated me for the award so it was great to get to meet him in person. He and I discussed his thoughts on my upcoming panel questions, and it was good to get his perspective.

By this time, we were able to reconnect with Richard, Jay, and Adam. One last pep talk and I was off to meet NIH Director Francis Collins! He was very aware of my personal story and seemed receptive to Dragon Master’s database project. I got the chance to tell him that we would love to work in conjunction with the NIH and he seemed receptive to that idea.

A portion of the afternoon is available on YouTube: http://bit.ly/1fv5nne

The room was filled with passionate people who care deeply about making a positive impact on healthcare and precision medicine. And oddly enough, they seemed to be mostly in agreement on the changes that need to happen:

  • greater sharing of data, especially to new populations of people like patients and their families
  • education of the general public so they will understand their rights when it comes to data
  • special care to include parts of the population that may feel alienated from the process

I’m proud to say that the database we are working on will definitely address the data sharing issues. I hope that as we are building it we can also help people understand their role in how this data can be used. We want to include everyone in the process of collecting and using the data, so I hope that we can be transparent in the process and help everyone feel secure about their choices to share data.

In an effort to help people understand why this is all so important, I’m going to be making some videos about our database and how it can be used. We will be taping some of these videos at WSU on Thursday, July 16th at 10am in the Rhatigan Student Center. I’d love it if you could join us, and ask any questions you may have about Dragon Master Foundation and our database.

Working Together for A Brighter Future

Uncategorized

This week I had the great pleasure of speaking with Dr. Peter Adamson, Group Chair of the Children’s Oncology Group (COG). For those of you unfamiliar with COG, more than 90% of  children and adolescents diagnosed with cancer each year in the United States are cared for at Children’s Oncology Group member institutions. Their goal is to cure all children and adolescents with cancer, reduce the short and long-term complications of cancer treatments, and determine the causes and find ways to prevent childhood cancer. That matches our mission pretty well, so I was excited to learn where we might be able to collaborate.

COG is currently focused on collecting biospecimens and clinical data. In layman’s terms, they are collecting cancer specimens (tissue, blood, etc) as well ad information on the child’s diagnosis, treatment and outcome. They have collected a massive amount of data over the past 50 years. They have well over a million biospecimens! More than 350,000 patients have shared data with them. They have biorepositories and databases in different parts of the country and work with over 220 hospitals in the US & Canada.

I am very impressed by what they have accomplished, but ultimately, I believe that the infrastructure we are building can improve the work they are doing. Their focus is collecting the specimens and data. Our focus is taking those specimens and data and making them a perpetual resource backed by robust computational power to allow them to collaborate with other researchers and also analyze and visualize the data in new ways.

To give you some idea of the scale of the data, let’s look at the numbers. There are approximately 14,000 children a year diagnosed with cancer in the US. Collecting a biospecimen would cost somewhere in the range of $1,000. (The NIH currently values that at around $500, but the actual institutional cost is thought to be much higher, thus my $1,000 figure.) So just to collect the biospecimens for those patients, you are looking at $140,000 per year. However, that is just scratching the surface of what needs to be done. Those specimens have to be stored (visualize giant freezers with robots to access the individual samples), categorized, and matched with corresponding clinical records.

Traditionally, most hospitals and foundations have been unwilling and/or unable to invest in the infrastructure that it would take to compile this amount of data. COG demonstrated real vision by collecting this data and they have been able to use it to forward science. Dragon Master Foundation believes that additional computational power, or “big data” analytics, will help them find the cures they seek even faster.

Dr. Adamson said he felt Dragon Master Foundation is taking “a sophisticated look at the challenge.” We know that building this type of computational infrastructure will be expensive, but we also know that it will exponentially decrease the amount of time it takes for researchers to collect and query data. Faster answers to their questions means faster cures for us.

There is no doubt in my mind that we are building a resource that will improve cancer research. It ultimately will help cancer researchers throughout the US, and probably throughout the world. It will make the work they have been doing for years more relevant.

To learn more about Dragon Master Foundation, please visit http://www.dragonmasterfoundation.org. To learn more about the Children’s Oncology Group, please visit projecteverychild.org or childrensoncologygroup.org .