Wednesday, July 31, 2013

BigBrain - What Does It Mean?

From James Beck, Ph.D., Vice President of Scientific Affairs

This blog is part two in a series of three about the BigBrain.

Several weeks ago saw the announcement of a description of a new and highly detailed atlas of the brain, called BigBrain.  PDF wrote about how one person, making the decision to donate their brain, has made a significant contribution to science.  Indeed, that is true.  But what does this really mean for the future of neuroscience … and Parkinson’s research?
  1. BigBrain is like the Google Earth of the brain, allowing researchers to not only see the big picture of brain anatomy but also allowing them to zoom in with incredible resolution to practically see individual cells.
  2. Although BigBrain is like Google Earth, it currently does not have any labels.  That is, if you do not already know what you are looking at, BigBrain will not be able to help you.  (Is that New York City or Jersey City that I see?) Not all scientists are experts in neuroanatomy and so not everyone looking at BigBrain can delineate every brain structure.  Besides, annotating BigBrain will only need to happen once.  As this is done over time, researchers of all stripes will be able to ask interesting questions.
  3. BigBrain is helpful, but it's just that: one person’s brain … Just like the first genome sequenced in the Human Genome Project was just one person’s DNA.  Half the battle here has been establishing the procedures to actually create a BigBrain.  As more courageous individuals donate their tissue, scientists will be able to generate more BigBrains in order to capture all the individual variation that is in each of our heads.
In sum, BigBrain is what they call “enabling technology.”  On its own it does not do much, but when combined with other technologies it is a powerful tool that can move science forward.  Thinking what the personal computer or the Internet have done recently, it will be exciting to see how this will change neuroscience.

(A view from the BigBrain atlas. The substantia nigra, where dopamine neurons are lost in PD, are the dark bands located below the two dark circles in the center.)

Tuesday, July 16, 2013

Righting the Clinical Research "Enterprise"

By Ronnie Todaro, M.P.H., Director of National Programs

When opening the Sunday Review section of the New York Times this past weekend,  I did a double-take as a topic of much discussion here at PDF was featured front and center - trumping commentary on the state of the economy, international relations and the latest political debate.

"Do Clinical Trials Work?," by Clifton Leaf serves as a primer on some of the key issues that prevail within the clinical research enterprise - the tension between scientific inquiry and patient priorities; the odds that study sponsors take when betting on the success of a potential therapy; and the disconnect between those who participate in a study and those who may actually benefit from the treatment being tested. It also serves as yet another wake-up call on why people who are living with a disease, be it cancer, Alzheimer's or Parkinson's, need to be formally included in research decision-making.

I can't help but wonder, would clinical research be in a different state if people who actually had the disease were sitting around the table, eye-to-eye with researchers, study sponsors and federal regulators? Would their presence and perspective change the priorities and processes of clinical research? Would it create the sense of urgency that occurs when the personal is married with the professional?

Of course, we here at PDF would  answer in the affirmative as would our 200 Research Advocates across the country.  The bottom line - we can right this "Enterprise" - but only if we recognize who should be at the helm - the patient.