Stories about: clinical research

Marching because science saves lives

Timelapse video: Boston’s March for Science in 120 seconds (Credit: Kat J. McAlpine)

One definition of science: “The field of study concerned with discovering and describing the world around us by observing and experimenting.”

Another, simpler definition: “The state of knowing.”

At Saturday’s March for Science in Boston, people brandished signs defending facts, data, even the act of thinking. But with the National Institutes of Health budget under attack — a potential 18 percent cut — the most compelling signs were those that stated: “Science saves lives.”

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SHRINE: Clinical & population research by the numbers

Clinical research is all about numbers. A new informatics network called SHRINE could help make it easier to get find out if the numbers of patients are there to answer complex questions. (victoriapeckham/Flickr)
Ed. note: This morning at 8:15 EDT, Isaac Kohane, MD, PhD, will tell the audience at TEDMED 2013 about his goal of using every clinical visit to advance medical science. 

To preview his talk, we’ve updated a past Vector story about SHRINE, a system Kohane helped develop to allow scientists to use clinical data from multiple hospitals for research.

Clinical research really comes down to a numbers game. And those numbers can be the bane of the clinical researcher. If there aren’t enough patients in a study, its results could be statistically meaningless. But getting enough patients for a study, particularly for rare diseases, can be a daunting challenge.

The Shared Research Information Network (or SHRINE) could help solve this vexing problem. Developed through Harvard Catalyst by a team led by Isaac “Zak” Kohane, MD, PhD, director of Boston Children’s Hospital’s Informatics Program, SHRINE links the clinical databases of participating Harvard-affiliated hospitals—currently Boston Children’s Hospital, Beth Israel Deaconess Medical Center, Brigham and Women’s Hospital, Dana-Farber Cancer Institute and Massachusetts General Hospital—letting researchers at those hospitals see how many patients from those hospitals meet selected criteria.

Why is this important?

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Mind the gap in drug research for children

Diseases like malaria strike children harder than adults, but clinical trials for these diseases rarely include or focus on children. Why? (WHO/P. Virot)

We’re pretty focused on the safety of the things around us. Our drinking water gets checked for chemicals, bacteria and other things that could make us sick. Kids’ car seats are tested to make sure they’ll keep children safe in an accident.

But there’s one surprising arena where this focus on safety and testing often falls short: the medications we give our children. Not just in the United States, but globally.

There are lots of reasons why fewer drugs get tested for safety and efficacy in children than in adults. It’s time-consuming, expensive and, frankly, risky. The ethics of testing new medications in children are pretty thorny.

And, overall, the market for pediatric drugs is much, much smaller than that for drugs for adults, since children fortunately don’t get sick as often as us grown-ups.

But for some diseases like asthma and diarrheal diseases, children bear a greater burden than adults—one that’s not matched by the amount of research done on drugs for kids.

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Donation and compensation in research: Should patients be paid?

Cells collected from patients are the backbone of much of biomedical science. When should patients be paid for those cells? (jepoirrier/Flickr)

A few months ago, my mother had a skin cancer removed from her nose. To the best of our knowledge, the tumor tissue was discarded in a biohazard bag, never to be seen again.

Often, though, bits of tumor like that removed from Mom become the raw material that keeps the engine of research running. And every once in a while, a patient’s tissues lead to a real blockbuster, like a cell line or a protein with uniquely valuable biological properties or a lucrative drug that benefits millions of people.

Which brings us (literally) to the $64,000 question: Should the patient who donated those tissues reap some of the rewards?

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Meta-analyses: Comparing apples to oranges

Photo: Dano/Flickr

When you get down to it, science, particularly in the clinical realm, is something of a numbers game. An experiment or study’s weight depends greatly on its size (how many patients took part, how many times the experiment was repeated, etc.). For any number of reasons, though, researchers may only be able to bring a few people into a study and collect limited data, restricting both the answers it can provide and the impact of those answers on the field. Such has been the case with autism, for example, where studies tend to be small and patient populations haven’t always been well defined.

But what if one could compare apples to oranges – or, at least, Golden Delicious to Cortlands – by creating one large “uberstudy,” merging the results of many small studies in ways that would allow comparisons among them to generate some level of consensus about a treatment or discovery?

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