Data by itself offers us no clues to beating cancer. Even as a result of diligent collection from a research trial it offers little more than a confirmation of hypothesis. But what happens when data gets together? What happens when you collect data organically, across platforms and at the source? There you can detect patterns, form new theories and even cure cancer.
It’s not a novel idea to collect data. For hundreds of years researchers fighting every known disease have assembled facts collected from their observations, hoping to prove or disprove their hypotheses. And while well intended, their efforts were frequently hampered by restrictions of both financial and time. They may collect data about the specific diagnosis, the age of the subject or even the gender or geographic origin, but ultimately it was in pursuit of an answer rather than a question.
In 2011 the fight against diffuse intrinsic pontine glioma (DIPG) was no different. Dozens of hospitals each had their own limited databases containing an assortment of information for about 10-20 patients for this rare and elusive form of brain cancer. But what was frequently seen as challenge to DIPG in that it only affected between 150-300 patients per year, suddenly became a strength. You see with DIPG, no one could collect enough data to make any conclusion, let alone develop a treatment protocol for children desperately in need. Whereas with any other form of cancer one singular hospital could collect enough data on 50-100 patients to establish one pattern, with DIPG no hospital could work alone.
This difficulty became the subject of the International DIPG Symposium, first sponsored by The Cure Starts Now and held in Cincinnati, Ohio in 2011. There we realized that if we were to advance the fight against DIPG we had to first understand the tumor better – and no one hospital or researcher could do it alone. From this convention the International DIPG/DMG Registry was born – one of the first of its kind. Unlike other registries, this program was led by both patients and researchers.
Together over 110 hospitals, countless researchers in over 14 countries and over 70 foundations and chapters came together to form a registry that today defines how many other cancers now collect data.
Today, support for the Registry is shared through the efforts of the 25+ foundation members of the DIPG Collaborative. Here the Registry isn’t a factor of what we can collect, or even what we want to prove – instead it is a registry asking everything we can possibly ever want to know. This means we don’t predict patterns, we let the data lead us to the answers. This is what makes a “linked” database different than a random collection of various data inferred from multiple trials. Here patterns are organic, proven both by reliance of a larger sample group and not subject to the prejudice of individual collection procedures that can come with multiple datasets collected from different sample groups that may not match up when compared.
What has the Registry achieved?
Already it has advanced not only our understanding of these brain tumors, but it has also fundamentally contributed to how we fight many other cancers. It has helped identify new mutations, offered unimagined drug combinations and demonstrated the true “homerun” potential of this previously unknown cancer called DIPG.
How does it work?
Ultimately the International DIPG/DMG Registry is a product of its contributors. Those that offer data to the Registry get access to parts of the data, much in the same way that the Human Genome Project was founded. For those researchers with little to no data to contribute, they can apply to the Registry with a stated goal and be granted access to the data to develop new treatment strategies. Over 50+ clinical trials have been initiated because of this work, with some invented purely as a result of analysis of data trends previously unknown.
Still, data collection is only as good as the integrity of the submission process. Unlike other registries that may have a decentralized data entry process, the International DIPG/DMG Registry utilizes a core staff that travels to the hospitals to uniformly enter data while normalizing certain fields to conform to the current framework. There they can also train local staff as well as establish periodic update timelines.
Best of all, it is for the benefit of the patient. As part of this unparalleled effort, the International DIPG/DMG Registry also provides a vital resource to patients and parents in the fight, offering resources to help provide second opinions, central review of MRIs (to help minimize misdiagnoses) and key treatment data at their fingertips. Even the data collection is patient-focused, with a committee specifically designed to offer feedback on field management so that it can be responsive to new trends and additional data submissions.
What information does the Registry collect?
All in all, each patient entry is subject to genomic and tissue analysis, and over 400 clinical questions. Overall this leads to thousands of data set collection measures on over 1100 patients worldwide. One of the most extensive patient registries in the world, this delivers hundreds of new treatment paths, some of which are still unknown, and a foundation of data that is sure to revolutionize not only DIPG research but all of cancer research.
Interested in joining the Registry?
All you need to do is visit www.dipgregistry.org. There you can sign up (even if your hospital didn’t present the option at diagnosis) and the Registry team will reach out on your behalf to start the process. Already enrolled? You can confirm that you or your child is in the registry simply by calling the phone number on the website or sending a message – it’s that simple. Want to learn more? At dipgregistry.org you’ll find a wealth of data and information about the diagnosis and resources at your fingertips.