What are the challenges in brain illness and injury research that One Mind can help address?
A big challenge in brain injury and illness is that the brain is the most complex organ in the human body. One Mind believes that creating global public-private partnerships among governmental, corporate, scientific, and philanthropic communities will help to accelerate our knowledge of the brain. These partnerships will also help facilitate data sharing and collaboration, accelerate large-scale research, and provide a greater focus being placed on the needs of the patient.
Another challenge is that the majority of funding goes to siloed research where sharing data is not common. This strategy has taken the focus away from patient-centered outcomes.
Low funding for neurological research is also a challenge. Based on the number of people affected by neurological disorders, current funding levels are significantly lower than that of cancer or AIDS.
The reasons? Government funding is historically fragmented, funding many individual scientists’ studies rather than collaborative research projects that could lead to more significant results. And corporate funding (primarily from the pharmaceutical industry) has already decreased so dramatically that it can be considered insignificant.
To make matters worse, translating research results to actual cures can take many years. In fact, this process is so arduous that the scientific community calls it “The Valley of Death,” in that people are literally dying because cures do not exist.
How underinvested is neurological diseases and injuries comparatively? Cancer and heart disease affect far fewer people, yet receive equal funding support to brain diseases.
How is One Mind incorporating open science principles into its work?
One Mind supports the approach that large research studies combined with open science principles will greatly accelerate the discovery of better diagnostics, treatments, and, someday, cures for diseases and injuries of the brain.
Two projects we help support that focus on this approach are clinical studies for post-traumatic stress (PTS) and traumatic brain injury (TBI).
TRACK-TBI (Transforming Research and Clinical Knowledge in Traumatic Brain Injury) is a nationwide collaboration among 11 research universities whose trauma centers will enroll 3,000 patients in a longitudinal brain injury study. The overall goal is to determine the relationships among the clinical, neuroimaging, cognitive, genetic, and proteomic biomarker characteristics for the entire spectrum of a TBI – from concussion to coma. The first patient enrolled in February 2014.
CENTER-TBI (Collaborative European NeuroTrauma Effectiveness Research in TBI) is an observational study with the aim to better characterize TBI that will include data collected from nearly 6,000 patients from three strata: patients seen in the emergency room, patients admitted to hospitals, and patients admitted to an intensive care unit ward. In addition, a registry of around 25,000 subjects will be established.
The One Mind Portal is another way we are incorporating open science principles into our work. It will enable clinician collaboration, data sharing, and data mining for brain research on an unprecedented scale.
How have private-public partnerships helped One Mind achieve its mission?
With private partnerships One Mind has been able to leverage National Institutes of Health funds to fill in the gaps that are not funded with the research grants. We have used the funds to pay Clinical Data Interchange Standards Consortium (CDISC) to convert the TRACK-TBI common data elements to Food and Drug Administration-compliant elements.
One Mind is already supporting the digital curation of the data while the study is in its first year. By doing this, the first 1,000 patients’ data will be analyzed to produce a hypothesis around a better diagnostic, which will allow the study to test that hypothesis on the final 2,000 patients in the trial.
Funding support One Mind has received from private partnerships has allowed the TRACK-TBI study teams the ability to provide patient stipends and transportation for follow-up visits. The current return rate has doubled the average study return rate, which means a huge return on investment and more data points to draw from.
What do you consider the greatest accomplishments of One Mind?
One Mind has been able to work with neuroscientists to support a large collaborative study using common data elements and standard protocol. This learning community network has created a large database that will be open to other neuroscientists as they search for better diagnostics, treatments, and cures. It is with these studies together, and creating this neuroscience data resource, that One Mind is proving how you can accelerate research.
One Mind has also begun to address the barriers that keep scientists from sharing data. Based on the findings from our 2014 One Mind Summit, we have created a white paper that begins to address those barriers and what will need to be done to accelerate open science.
What are your top research goals in 2015, and what will it take to reach those goals?
Our top research goals in 2015 are to create a knowledge network and learning community for PTS and TBI.
Investigators have told us that data sharing and collaboration are the keys to accelerating knowledge, and that the intersection of fields leads to major advances in science. One Mind is working to leverage and enhance major PTS and TBI studies by facilitating collaboration and integration of data and knowledge across studies. In addition to linking PTS and TBI databases and advanced analytical tools to our data portal, One Mind will convene scientists so they can communicate and coordinate their study protocols and data elements as a critical step toward future research collaborations.
You might be asking, why does this kind of seemingly essential collaboration not take place as a matter of routine? The norm is to study a particular disease or injury in a silo. It is only recently that science has shown that many neurodegenerative diseases share common properties and are related. Researchers are beginning to believe that answers that they are looking for may be found in the data sets being collected by others, and collaboration is key.
The investigators brought together by this effort and the data generated will create a nidus for a multidisciplinary collaborative to accelerate the pace of clinical research in PTS and TBI – and more importantly – a new way of doing business in neuroscience research. This research will help everyone suffering from PTS and TBI.