The Gutenberg press disseminated ideas to a wider society. But in the clinical world, much information is still on "lockdown." (Wikimedia Commons)
The best things in life are free: friends, sunny days, beautiful vistas. Wouldn’t it be nice if knowledge were also free? Historically, libraries promulgated knowledge sharing because it was for the public good. We see this spirit increasingly embraced on the Internet – take the recent announcement of a collaboration between Harvard and MIT to make their courses freely available to users around the world via the edX platform.
But have we made all useful knowledge available in a way that allows for the greatest societal advancement? Not really. According to Ken Mandl, MD, MPH, director of the Intelligent Health Laboratory at the Children’s Hospital Informatics Program (CHIP), one important source of information still on lockdown is clinical trial data. In an article called, “Learning from Hackers: Open-Source Clinical Trials” published this month in Science Translational Medicine (not currently available in full text), Mandl and his coauthors call for making raw, de-identified clinical trial data free to the public. Full story »
Excess brain electrical activity at night can disrupt development -- but if found, may be treatable.
This is the second post in a series about new approaches for seizures and epilepsy.Read the first post here.
When a 2- or 3-year-old child begins losing milestones like language, walking skills and fine motor abilities, or is slow to achieve them, it’s devastating for families. The good news, at least for some children, is that it might be treatable.
Tobias Loddenkemper, MD, a neurologist in the Epilepsy Center at Boston Children’s Hospital, suspected that some children with developmental delay have seizure-like activity in the brain at night. These spikes of electrical activity, referred to medically as sleep-potentiated epileptiform activity, can be readily and inexpensively detected by electroencephalography, or EEG, and readily treated with nighttime anti-seizure drugs.
But likely, no one’s thought of it. “Very few physicians have been looking to see what’s happening at night,” Loddenkemper says.
He and research fellow Iván Sánchez Fernández, MD, with other colleagues, decided to look themselves. Full story »
This comfy wristband can sound an alarm when a child is having a seizure, and can help doctors better time medication dosing.
This is the first post in a series about new approaches for seizures and epilepsy.
Seizures are often hard to track in children with epilepsy, making it difficult for doctors to optimize their treatment. For parents, the greatest worry is that their child will have a life-threatening seizure in the middle of the night or away from home, unable to get help. And what about when that child goes off to college?
“Every parent asks, ‘What can I do to prevent my child from harm?’” says Tobias Loddenkemper, MD, a neurologist in the Epilepsy Program at Boston Children’s Hospital.
Loddenkemper also wanted to better understand his patients’ seizure patterns so he could better time the dosing of their medications. He’s been testing a wristband sensor system, developed by Rosalind Picard, ScD, and colleagues at the MIT Media Lab (Epilepsia, March 20), and thinks it could be part of the solution. Full story »
When children return home from the hospital after surgery, parents can be overwhelmed by the written information and instructions for follow-up. At the MIT Media Lab’s Health and Wellness Hackathon earlier this year, the focus was on empowering patients to take an active role in their health. As my colleague Brian Rosman described, our team from Boston Children’s Hospital attended and spent two weeks developing “Ralph,” a mobile application for managing post-operative care that incorporates an avatar and features of gaming to engage and motivate children to follow their regimen. I was one of the primary programmers for our group.
We won third place, working alongside five other talented teams. Here are some snapshots of what they were up to — helping patients manage asthma, diabetes, pain, cardiac rehab and more. Full story »
Children's Hospital Boston's first Innovation Day Feb 14, 2012
On Tuesday, Children’s Hospital Boston featured its first Innovation Day. Organized by the Hospital’s Innovation Acceleration Program, which seeks to promote grass roots innovation within the hospital, the TEDMED style conference featured talks by 17 of the Hospital’s clinicians. Our Chief Innovation Officer Naomi Fried welcomed a packed house, which included attendees from across the country. Here we’re featuring some of the technologies that were revealed on Tuesday and how they’re changing the face of pediatric medicine: Full story »
Valentine's Day is Innovation Day (image: Richard Giles/Flickr)
In a series of 17 short TED-style talks next Tuesday, February 14, clinicians and scientists from Children’s will present new products, processes and technologies to make health care safer, better and less expensive. The event, from 1-5 p.m. Eastern, is sponsored by the Innovation Acceleration Program. It’s now running a wait list, but you can also watch the live stream or track the proceedings on Twitter (#iDay) or via @science4care. Here’s a small sampling of next week’s presenters; for details, read the press release or view the full agenda.
Diagnosing lazy eye when it’s most treatable: in preschoolers
If lazy eye, or amblyopia, is caught early – ideally, before age 5 – it’s easily treated by patching the “good” eye, forcing the child to use and strengthen the weaker eye. But if it goes unnoticed, the weak, unused eye can slowly go blind, Full story »
Recently, in the hospital cafeteria, I overheard a group of researchers discussing the upcoming availability of whole-genome sequencing to physicians. “We should devise a way to study how physicians will use this,” said one of them—underscoring the disruptive nature of the transformation that is currently happening in medicine.
The ability to immediately obtain whole-genome sequences from patients holds enormous potential for understanding and treating human disease. The list of studies reporting successful diagnosis of otherwise elusive orphan conditions is already too long to recount—more than 600 articles in PubMed as of the date of this posting—including poignant examples of advancing clinical care. Full story »
There are no best practices for turning patient's genome sequence into information that a doctor can easily understand…and act on. Children's Hospital Boston's CLARITY Challenge calls on the genomics community to come up with those practices, and possibly help three families in the process. (michab37/Flickr)
Personalized medicine, harnessing genomics to improve patient care, is a great idea on paper. But investigators have long struggled to find a smooth route from the bench – where patients’ DNA samples are sequenced – to the bedside, where a doctor can use a genomics report to diagnose illness, prescribe treatments and offer means of prevention.
Looking for innovations, Children’s Hospital Boston decided to use the incentive of competition, launching a contest called the CLARITY Challenge. The winner will be the company or group that can best translate the science of genomics into tools and methods that integrate into and inform everyday care. Full story »
Here once again is Vector’s take on some exciting trends we’ve been watching in the pediatric health arena and what we expect to see more of this year. If you’ve got others to propose, scroll to the bottom and let us know!
Genomics is starting to provide clinically actionable information (Michael Knowles/Flickr)
Whole-genome sequencing enters the clinic
In 2000, with our genome deciphered, the Human Genome Project promised to transform medicine, predicting and preventing all that ails us. The project spawned next-generation technologies, accelerated the development of bioinformatics and shaped new perspectives on research. But if, say, a stroke patient was asked the question, “Is your life any better than 10 years ago thanks to advent of genomics?” the answer would have to be “no.” Hence the New York Times’s assertion in 2010 that the project yielded few new cures.
Now that paradigm seems to be shifting. Whole-genome sequencing has begun moving into the clinic, sleuthing out problems, offering hope for a medicine that’s more effective and more personal. 2011 saw genomic information provide biochemical insights timely and actionable enough to improve the treatment of individuals with cancer and dystonia, and, in a case at Children’s, failure to thrive and severe kidney calcification. Full story »
Children’s neurologist-neuroscientist Mustafa Sahin, Simon Warfield, director of the hospital’s Computational Radiology Laboratory, and Jurriaan Peters compared brain organization in 29 healthy subjects with that in 40 patients with tuberous sclerosis, a rare genetic syndrome often associated with cognitive and behavioral deficits, including ASDs about 50 percent of the time. “Patients with tuberous sclerosis can be diagnosed at birth or potentially before birth, because of cardiac tumors that are visible on ultrasound, giving us the opportunity to understand the circuitry of the brain at an early age,” explains Sahin.
The panels above (click to enlarge) are advanced MRI images Full story »
