From the category archives:


africa trio kidsBeginnings—whether a new year or a new century—offer an optimal time for evaluating goals. Quality improvement literature reminds us that goals should be specific, measurable and timely, and that progress checks are crucial. With one year left to achieve the ambitious Millennium Development Goals (MDGs), global child health stakeholders are assessing gains and gaps.

In 2000, the United Nations set the MDGs, and homed its sights on child mortality in MDG 4, aiming to cut mortality among children younger than age 5 by two-thirds by 2015, from the 1990 base figure of 12 million.

By 2012, the figure was nearly halved to 6.6 million.

“There’s a hopeful sense,” says Judith Palfrey, MD, director of Boston Children’s Hospital’s Global Pediatrics Program in the Department of Medicine. At the same time, the goal remains “seriously off target for many countries,” wrote Zulfiqar Bhutta, MB, BS, PhD, from the Hospital for Sick Children in Toronto, and Robert Black, MD, from Johns Hopkins University in Baltimore, in The New England Journal of Medicine in December.

Palfrey agrees, noting that while some countries are on track to meet the goal, some have stagnated and some have regressed. “It may be that there are some intractable issues,” she says. The countries that have failed to make progress are marked by corrupt governments, armed conflict or both. Full story »

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Child being seen by cancer clinicians at Dana-Farber/Boston Children's Cancer and Blood Disorders CenterEarlier this month, the American Cancer Society (ACS) released “Cancer Statistics, 2014,” their annual estimate of new cancers diagnoses and deaths for the year ahead. The report was heavily focused on adult malignancies—not surprisingly, given that the number of adult cancer patients in the nation is orders of magnitudes greater than that of childhood patients—but did hold a few insights into childhood cancers.

It showed, for instance, that cancer is still the leading cause of disease-related death among children in the U.S. Leukemias, brain and other nervous system tumors, and sarcomas—tumors of the bones, joints and soft tissues—topped the list of the most lethal cancers for both boys and girls.

But that’s pretty much where “Cancer Statistics, 2014″ left off when it came to childhood cancers. However, the ACS also released a separate report in December—“Annual Report to the Nation on the status of cancer, 1975-2010″—that held a bit more news when it came to the recent pediatric cancer trends in the U.S.

And that news was…mixed. Full story »

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vent check MRAs recently as 2005, Boston Children’s Hospital’s Department of Radiology performed 25 to 30 CT studies daily to check ventricular shunts–devices placed in children with hydrocephalus and other conditions to drain fluid from the brain’s ventricles. Today, the volume of these CT scans has fallen to one exam every few days. Richard Robertson, MD, radiologist-in-chief at Boston Children’s, thinks this 77 percent drop is great news.

Neuro-imaging exams are essential for children with ventricular shunts presenting with new neurologic symptoms to help determine whether the shunt is working properly or has become blocked or disconnected. “Kids who have shunt catheters can have a large number of CT studies, in some patients up to 50 or 60 over their lifetimes. A child with an infection or shunt malfunction may have many studies even in a single month,” says Robertson.

Although the exams are necessary, exposure to ionizing radiation from even a single CT exam carries a slightly increased risk for cancer that rises with each subsequent exam. There is no known threshold below which exposure is considered safe.

During the 2005 meeting of the American Society of Neuroradiology, one of Robertson’s colleagues gave a presentation about single-slice acquisition MRI, a limited, two-minute exam that provides the basic information needed to assess the size of the cerebral ventricles. Full story »

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Children’s Cancer Hospital Egypt 57357Geography can be cruel. An 8-year-old diagnosed with leukemia in Europe or North America can expect a challenging but curable course. Her care, provided by a team of pediatric specialists, includes state-of-the-art imaging, thorough infection prevention and, often, multiple options for treatment.

Her peers in the Middle East and North Africa face a dramatically different prospect. Laboratory and imaging infrastructure can be limited, so diagnoses are made at later, less curable stages. Some patients can’t access acute care because hospital beds are in short supply. Available beds may be occupied by outpatients who can’t return home or palliative patients without access to hospice care. At many hospitals, pediatric inpatients are cramped into 10- to 15-patient wards, raising the risk of infection and other complications for children with compromised immune systems.

The overall lack of medical infrastructure and dearth of providers contribute to a substantial disparity in childhood cancer survival rates between high-income countries and the developing world. While many countries in Europe and North America have achieved cure rates in the 80 percent range, survival rates hover near 20 percent in low- and moderate-income countries. Full story »

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solving the autism equation

An 'Information Commons' could better delineate the different faces of ASD by combining objective molecular, biochemical and neurological measures.

Alal Eran, PhD, studies the molecular basis of autism at Boston Children’s Hospital and Harvard Medical School.

Yet another redefinition of autism spectrum disorder (ASD) has stirred up debate. The new Diagnostic and Statistical Manual of Mental Disorders (DSM-5) now collapses four previously distinct conditions—autistic disorder, Asperger syndrome, childhood disintegrative disorder and pervasive developmental disorder not otherwise specified—under one umbrella label of ASD. It also collapses the traditional autistic triad (social deficits, communication impairments and restricted interests/behaviors) into two domains: social/communication deficits and restricted interests/behaviors.

While intended to increase accuracy and utility, the new diagnostic criteria for autism—the fifth revision since 1980—have attracted an unprecedented level of criticism by clinicians, researchers and families. The criteria for membership in DSM categories are much less robust than those for other clinical classification schemes—as evidenced by the rapid change in the DSM over the last 50 years. But more importantly, they are based only on behavioral symptoms. Full story »

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Delivering a baby MEG

by Kipaya Kapiga on January 15, 2014

This array of sensors surrounding a baby's head will give researchers and eventually clinicians an clear and sharp image of neural activity.

This array of sensors surrounding a baby's head will give researchers and eventually clinicians a high-resolution image of neural activity.

Imagine you’re a clinician or researcher and you want to find the source of a newborn’s seizures. Imagine being able to record, in real time, the neural activity in his brain and to overlay that information directly onto an MRI scan of his brain. When an abnormal electrical discharge triggered a seizure, you’d be able to see exactly where in the brain it originated.

For years, that kind of thinking has been the domain of dreams. Little is known about infant brains, largely because sophisticated neuroimaging technology simply hasn’t been designed with infants in mind. Boston Children’s Hospital’s Ellen Grant, MD, and Yoshio Okada, PhD, are preparing to launch a new magnetoencephalography (MEG) system that will soon turn those dreams into reality. Full story »

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A water tap. It's time to tap electronic medical records for data that can help advance health care.Last month, we told you about cTAKES, which can read notes from clinical records and turn them into structured data that can be used for research on drug interactions, risk factors, clinical phenotyping and much more.

One of the key challenges with cTAKES, though, is getting access to the data in the first place. Electronic medical records (EMRs) generally run on proprietary platforms built for record keeping, and it can be difficult to extract data for research purposes. In addition, hospitals’ processes and controls around patient privacy usually don’t readily lend themselves to data mining.

Now mind you, when we talk about EMR data, we’re not just talking about notes, but also about the structured data gathered with every clinical visit and inpatient procedure, such as diagnosis, lab values and prescriptions. Those data could open up the taps for all kinds of clinical innovation—if researchers could get to them.

So what’s the solution? How do we make clinical data locked in EMRs work for research while keeping confidential information confidential?

Vector sat down with Jonathan Bickel, MD, Boston Children’s Hospital’s senior director of Clinical Research Information Technology (CRIT) and director of Business Intelligence, to learn what he thinks should be done. Full story »

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US Capitol with a Christmas treeVector is taking some time off for the holidays, but we wanted to leave you with some good news. After nearly 10 years of lobbying and debate, Congress finally passed the National Pediatric Research Network Act (NPRNA). President Barack Obama signed the act into law on Nov. 27.

As David Williams, MD, of Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, and Amy DeLong of Boston Children’s Office of Government Relations wrote on Vector back in September, NPRNA provides legislative authorization for a nationwide network of up to 20 National Institutes of Health (NIH)-funded pediatric research consortia.

Those consortia—each of which would be created through a competitive grant process modeled after the National Cancer Institute’s highly successful Comprehensive Cancer Centers initiative—would bring together the resources and expertise of multiple academic and health care institutions to make new headway against pediatric diseases.

In this way, the bill—sponsored by U.S. Representatives Lois Capps (D–CA) and Cathy McMorris Rogers (R–WA) and U.S. Senators Sherrod Brown (D–OH) and Roger Wicker (R–MS)—sought to address the severe shortfall in NIH funding for pediatric medical science. Only about 5 percent of the NIH’s current $30 billion budget goes to pediatric research. Full story »

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Food insecurity is a major problem for diabetic patients at the Kay Mackensen clinic in Haiti where Julia Von Oettingen, MD (top center) serves as medical director.

Food insecurity is a major problem for diabetic patients at the Kay Mackensen clinic in Haiti where Julia Von Oettingen, MD (top center) serves as medical director.

In parts of the developing world, especially remote, rural areas, it’s not unusual for people with diabetes to ignore their symptoms until they’ve collapsed and need immediate care. By the time they see a doctor, their blood sugar levels might be so high as to cause diabetic ketoacidosis (DKA), where the body starts breaking down fats and proteins, turning their blood acidic and leaving them extremely dehydrated.

For many, it won’t be the first such episode. But for some, it can be the last.

Stories like this are increasingly common across large swaths of the developing world—as Diane Stafford, MD, an endocrinologist from Boston Children’s Hospital, discovered when she traveled to Kigali, Rwanda, through the Human Resources for Health program. Full story »

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The Hacking Pediatrics team 2013Michael Docktor, MD, is a pediatric gastroenterologist, director of clinical mobile solutions at Boston Children’s Hospital and a co-founder of Hacking Pediatrics. Above: The Hacking Pediatrics executive team: Judy Wang, MS; Michael Docktor, MD; Alex Pelletier, MBA; Margaret McCabe, PhD, RN, PNP; Kate Donovan, PhDc, MBA, BS, from Boston Children’s Hospital. (Photos: K.C. Cohen)

A hackathon is most easily explained by relating it to the crowd-sourced, time-crunched challenges that we see every day in pop culture. From “Top Chef” to “The Apprentice” to “Extreme Makeover,” television is teeming with passionate individuals trying to solve a difficult task with incredibly constrained resources and time. What results is often remarkable by any standard and speaks to the power of concentrated, collaborative problem solving.

When the challenge involves children and their health, the results can be magical, as witnessed by the weekend-long Hacking Pediatrics in late October, the first event of its kind. More than 150 “hackers,” including engineers, designers, software developers, entrepreneurs and roughly 40 clinicians gathered to create ground-breaking solutions for children and their families. Full story »

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