Stories about: People

News Note: Norovirus outbreak threatens the Olympics

The HealthMap team at Boston Children's is currently tracking norovirus at the Olympics
The Computational Epidemiology Team at Boston Children’s Hospital tracks online, informal sources for disease outbreak monitoring and real-time surveillance of emerging public health threats through a platform called HealthMap. This is an image of what their surveillance dashboard is currently tracking (Feb. 15, 2018) in South Korea. Visit http://www.healthmap.org/en/ for more.

The 2018 Winter Olympics have brought nearly 3,000 delegates from 206 countries together in PyeongChang, South Korea. But just a week after kicking off on February 8, the games and its attendees are already being interrupted by a fast-spreading norovirus outbreak.

Norovirus is an extremely infectious disease transmitted through food, water or by touching a contaminated surface. Infection causes inflammation of the stomach and intestines, which can lead to symptoms including stomach pains, nausea, vomiting and diarrhea.

In PyeongChang, there have already been 199 confirmed cases of norovirus — many of those sickened have been security guards hired for the games. Due to severe gastrointestinal symptoms, 41 guards have been hospitalized and more than 1,200 were placed in quarantine. 

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Sickle cell gene therapy to boost fetal hemoglobin: A 70-year timeline of discovery

sickled cells occluding a blood vessel
Sickled cells occluding a blood vessel. (Image: Elena Hartley)

Boston Children’s Hospital is now enrolling patients age 3 to 35 in a clinical trial of gene therapy for sickle cell disease. Based on technology developed its own labs, it differs from other gene therapy approaches by having a two-pronged action. It represses production of the mutated beta hemoglobin that causes red blood cells to form the stiff “sickle” shapes that block up blood vessels. It also increases production of the fetal form of hemoglobin, which people normally stop making after birth.

Fetal hemoglobin doesn’t sickle and works fine for oxygen transport. The gene therapy being tested now restores fetal hemoglobin production by turning “off” a silencing gene called BCH11A.

BCL11A represses fetal hemoglobin and also activates beta hemoglobin, which is affected by the sickle-cell mutation,” David Williams, MD, the trial’s principal investigator, told Vector last year. Williams is also president of the Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. “So when you knock BCL11A down, you simultaneously increase fetal hemoglobin and repress sickling hemoglobin, which is why we think this is the best approach to gene therapy in this disease.”

The therapy is the product of multiple discoveries, the first dating back 70 years. Click selected images below to enlarge.

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What’s trending in neurological drug development?

Advanced MRI scans of the brain showing neural network connections
Credit: Boston Children’s Hospital

Momentum has been growing in the field of neuroscience in our ability to understand and treat various disorders affecting the brain, central nervous system, neuromuscular network and more. So what are the key ways that researchers and drug industry collaborators are discovering new therapies for preventing or reversing neurological disease?

Experts weighed in recently to offer their insights.

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Cellphone data reveals Hurricane Maria’s impact on travel in Puerto Rico

Residents evacuate Puerto Rico after Hurricane Maria made landfall
A U.S. Naval Aircrewman leads residents of Puerto Rico to a helicopter for evacuation following the landfall of Hurricane Maria. Photo credit: Sean Galbreath/Wiki Commons

Nearly two months after Hurricane Maria swept through Puerto Rico, the infrastructural damage remains evident — today, FEMA estimates that only 41 percent of the island has had power restored. But the impact on human behavior is just beginning to be understood.

Research collaborators from the Boston Children’s Hospital Computational Epidemiology Group, MIT Media Lab and Google, Inc., have shed light on the particulars of when people chose to move out of the hurricane’s path and how much travel has been hindered since destructive winds and flooding knocked Puerto Rico off the grid.

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Personalized care model enhances preterm babies’ development

NICU baby with his mother
Christian, born at 26 weeks gestation, has lived in the NICU since May. (Photos: Katherine C. Cohen, unless otherwise noted)

November 17, 2017 is World Prematurity Day.

From a cozy, dark and quiet existence, a preterm baby is forced out into a harsh, bright and noisy environment. Instead of being comforted and held securely by their parents, preemies are poked and prodded, hooked up to machines and exposed to jarring sights and smells as their developing brains struggle to realign.

Each year, an estimated 15 million babies around the world — 1 in 10 — are born prematurely. Medical advances enable more of them to live, but often with medical and developmental problems.

Heidelise Als, PhD, director of Neurobehavioral Infant and Child Studies at Boston Children’s Hospital, has worked for more than 30 years to create better outcomes, developing the Newborn Individualized Developmental Care and Assessment Program, or NIDCAP.

The NIDCAP model of care seeks to support the development of fragile newborns and reduce their stress. In a series of studies, Als and colleagues at other hospitals have documented its successes: improvements in lung function, feeding and growth; shorter lengths of stay; a reduction in brain hemorrhage and improved brain function and structure, with brain effects lasting until at least 8 years of age. Benefits have been documented even in medically fragile, very preterm infants and infants with severe intrauterine growth restriction.

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Saving Vanessa part 2: Parent-driven science

DADA2 symptoms can be controlled with medications
Why did Vanessa’s mysterious rheumatologic condition cause her to have a stroke?

Two-year-old Vanessa had survived the unthinkable: two massive cerebral hemorrhages, nine days apart. Katherine Bell and her wife Nancy Mendoza felt immense relief at their daughter’s close call. But they wanted to know more. What had caused Vanessa’s strokes? Would there be more? Was the cause treatable?

The strokes were the culmination of a mysterious illness that had started with a rash. Because of high levels of inflammatory proteins in her blood, Vanessa’s rheumatologists, Pui Lee, MD PhD and Robert Sundel, MD, had given her a provisional, somewhat vague diagnosis of periodic fever syndrome.

“In rheumatology, we have to be comfortable with operating with a lot of unknowns,” Lee says.

But the strokes occurred despite three different anti-inflammatory treatments, which worked only temporarily. Bell, less comfortable with the unknowns, began searching the medical literature.

“It helped me feel calmer,” Bell says. “The more information I have, the less out of control I feel.”

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Under the hood of healthcare innovation: Jared Hawkins and the digital phenotype

Jared Hawkins Boston Children's Hospital

What does it take to change healthcare for the better? In the second of a two-part series on digital health innovators at Boston Children’s Hospital, we profile Jared Hawkins, MMSc, PhD. Like Gajen Sunthara, MSc, featured in part one, Hawkins was named among MedTech Boston’s 40 Under 40 Healthcare Innovators for 2017.

Jared Hawkins, director of informatics at Boston Children’s Innovation and Digital Health Accelerator (IDHA), brings a formidable skill set to his work. With a PhD in Immunology from Tufts University School of Medicine and an MMSc in Biomedical Informatics from Harvard Medical School, his background combines biomedical research (immunology, virology, oncology, genomics) with data science, visualization, computational modeling and software development.

His current work spans an equally diverse range of topics, touching on population and public health, patient experience, decision support and pharmacogenomics. A faculty member in the Computational Health Informatics Program, Hawkins is wired into the digital health ecosystem. He serves as a scientific advisor and co-founder of Raiing Medical (home temperature and fertility tracking) and is the head of engineering and co-founder of Circulation (non-emergency medical transportation via Uber).

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Under the hood of healthcare innovation: Gajen Sunthara and leveraging EHRs

Gajen Sunthara
(Photo: Greg Weintraub)

What does it take to be an innovator changing our healthcare system for the better? This two-part series profiles two digital health innovators at Boston Children’s Hospital who were named among MedTech Boston’s 40 Under 40 Healthcare Innovators for 2017.

Gajen Sunthara, MSc, has two innovation passions: healthcare policy and electronic health records (EHRs). With professional experiences spanning technology, business and government, he finds himself in a position to effect change in a way that few others can.

“Gajen’s passion for healthcare is evident from the moment that you meet him,” says Farhanah Sheets, a software engineer at Boston Children’s Innovation and Digital Health Accelerator (IDHA) who reports to Sunthara. “No matter how big or small the idea, he brings a level of excitement to each project that is contagious.”

As director of Innovation R&D for IDHA, Sunthara is leading significant efforts around EHR interoperability — the ability of healthcare information systems to exchange and use each other’s data. He’s also focused on creating applications that can easily be integrated into any EHR system.

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GALLERY: Forecasting the future of pediatric hematology/oncology

Title image for pediatric hematology/oncology predictionsRecently, the annual ASPHO (American Society for Pediatric Hematology/Oncology) meeting brought together more than 1,100 pediatric hematologists and oncologists, including a team from the Dana-Farber/Boston Children’s Cancers and Blood Disorders Center. Some of the delegates from Dana-Farber/Boston Children’s included:

Based on their discussions with their peers, these are their key takeaways from the meeting:

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Preparing patients and families to manage ventricular assist devices

Beth Hawkins ventricular assist devices

Children in severe heart failure sometimes have a ventricular assist device (VAD) implanted in their chest. VADs are electrically-powered heart pumps that can tide children over while they wait for a heart transplant. They can also be implanted long term if a child is ineligible for transplant, or simply buy children time to recover their own heart function.

Because problems with VADs can be life-threatening, families need extensive training in managing the device and its external controller at home. Nurse practitioner Beth Hawkins RN, MSN, FNP-C, and her colleagues in the Boston Children’s VAD Program begin the training at the child’s hospital bedside while they are still in the cardiac ICU. But despite lectures, demos and practice opportunities, the prospect of maintaining a VAD remains terrifying for many parents and children.

“A lot of families feel their child is attached to a ticking time bomb that could go off at any time,” says Hawkins. “Many say taking a child home on a VAD feels like having a newborn baby again.”

Hawkins realized that families needed more support.

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