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a laptop is open showing an virtual bedroom where a child is in bed and there is a table with medical equipment.

New online peritoneal dialysis simulator gives the power of education to patients

Clinical Care, Transforming Tomorow
For years, patients who need peritoneal dialysis, a form of home-based treatment for kidney disease, have had to educate themselves about the approach. “Many families have never heard of peritoneal dialysis prior to their child’s diagnosis,” shares Dr. Deborah Stein, a nephrologist in the Division of Nephrology at Boston Children’s Hospital. The idea of peritoneal ... Read More about New online peritoneal dialysis simulator gives the power of education to patients
Tagged: complex care, nephrology, research
Ipek Kuzu in a princess costume in her living room.

Seeking a path forward for custom genetic treatments

Clinical Care, Research
In 2018, at age 7, Mila Makovec became the world’s first person to be treated with a drug made just for her. Languishing from Batten disease, a rare, fatal neurodegenerative disorder, she received an antisense oligonucleotide (ASO) drug designed to silence her genetic mutation, injected into the fluid around her spine through a lumbar puncture. ... Read More about Seeking a path forward for custom genetic treatments
A girl is waving on a beach to two boys swimming in the ocean.

Diving into summer: What to know about water safety

Primary Care
The sun is back, the temperatures are rising, and that means more of us will be heading towards the water to cool off. Whether your family is going to a pool, beach, lake, or pond, knowing how to keep your children safe when splashing in the water should be top of mind. We recently spoke ... Read More about Diving into summer: What to know about water safety
Tagged: primary care, primary care alliance, safety, summer safety
A doctor seated at a desk is typing on a laptop.

Making autism evaluations accessible: Boston Children’s tests virtual options

Primary Care
At this time the virtual autism diagnosis program is only available to internal Boston Children’s Hospital primary care patients who receive care at the Children’s Hospital Primary Care Center or at Boston Children’s at Martha Eliot. Many obstacles can delay a diagnosis of autism in children, including language barriers, waiting lists for evaluation, and access ... Read More about Making autism evaluations accessible: Boston Children’s tests virtual options
Tagged: autism, autism research, autism spectrum disorder, telehealth
A cerebral arachnoid cyst with abstract genes.

Rethinking cerebral arachnoid cysts through genomics

Clinical Care, Specialty Care
Cerebral arachnoid cysts are the most common mass-occupying brain lesion in humans. Some cause no noticeable symptoms and may just be incidental findings. Others are quite severe, causing hydrocephalus and potentially nerve damage; these clearly require surgery to drain the cyst fluid and relieve pressure on the brain. But a middle ground sits between these ... Read More about Rethinking cerebral arachnoid cysts through genomics
Tagged: brain malformation, genetics and genomics, neurology, neurosurgery, psychiatry
Drs. Dickie and McNamara of the Colorectal and Pelvic Malformation Center care in the operating room.

‘The teamwork is outstanding’: A look inside the Colorectal and Pelvic Malformation Center

Clinical Care
In honor of Women’s History Month, we sat down with some of the clinicians in Boston Children’s Colorectal and Pelvic Malformation Center (CPMC), one of the only centers of its kind led and staffed primarily by women. Here’s what they had to say about their work, their patients — and their hopes for the future. ... Read More about ‘The teamwork is outstanding’: A look inside the Colorectal and Pelvic Malformation Center
Tagged: colorectal and pelvic malformations, nephrology, surgery, urology
a hand holding an infant's feet

Congenital hypothyroidism: New guidance for clinicians

Clinical Care
Congenital hypothyroidism is usually caused by a baby being born with an absent or underactive thyroid gland. When not treated, it’s one of the most common preventable causes of intellectual disability. Although newborn screening can identify congenital hypothyroidism and lead to prompt treatment, an estimated 70 percent of newborns worldwide are born in regions that ... Read More about Congenital hypothyroidism: New guidance for clinicians
Tagged: endocrinology, research
The legs of a little girl in a wheelchair.

Research offers guidance on genetic testing for cerebral palsy

Clinical Care, Specialty Care
A recent meta-analysis confirms what a small study at Boston Children’s found last year: About 1 in 4 children with cerebral palsy (CP) who had DNA testing had genetic variants likely to have caused or contributed to their condition. With the new data, the researchers have expanded the traditional view of the condition and offer ... Read More about Research offers guidance on genetic testing for cerebral palsy
Tagged: cerebral palsy, genetics and genomics, neurology, research
The head of a little girl with EEG leads attached to her face and scalp.

A path forward for genetic testing in unexplained epilepsy

Clinical Care, Specialty Care
The number of genes implicated in epilepsy has grown rapidly in the past decade. This raises questions about what tests to offer to people with unexplained epilepsy and whether those tests would yield actionable information. Now, practice guidelines developed by genetic counselors at Boston Children’s Hospital offer a way forward. In the first systematic evidence ... Read More about A path forward for genetic testing in unexplained epilepsy
Tagged: epilepsy, genetics and genomics, neurology, research
A hospital patient being cared for at the bedside, with two superimposed hands passing a sign that says I-PASS.

I-PASS this patient to you: Improved hospital ‘handoffs’ cut adverse events by almost half

Clinical Care, Research
About 15 years ago, Boston Children’s Hospital pediatricians Christopher Landrigan, MD, MPH, and Amy Starmer, MD, MPH, observed a weak link in hospital care. Medical residents were rigorously trained to take patient histories with standardized templates and to present cases in a structured format during daily rounds. Yet such structured communication was largely absent at ... Read More about I-PASS this patient to you: Improved hospital ‘handoffs’ cut adverse events by almost half
Tagged: complex care, medical training, safety

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