On the Pulse

Research, philanthropy a welcome fit in current funding climate

Rolled money in a test tube

Headlines these days related to research funding are grim: “Seattle researchers fear federal cuts will costs lives and jobs” and “Show me the money: Is grant writing taking over science?” are two recent stories that ran in the Puget Sound Business Journal and The Guardian, respectively.

The federal government announced in May that the National Institutes of Health 2013 budget will drop by five percent, or $1.71 billion, to $29.15 billion, compared to 2012. The cuts are part of the effort to balance the budget and, based on what our researchers say, are part of the “new normal” moving forward.

But there’s a bright spot here at Seattle Children’s: Philanthropy for research is increasing, and it’s making a difference.

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Tips for parents of children enrolled in a research study

On the Pulse recently posted a story on bioethics and research from Ben Wilfond, MD. In that story, Wilfond defended a research study that had been criticized by federal officials over the informed-consent requirements. We thought it would be helpful to follow up with tips for parents who are interested in or have children enrolled in research studies. This is the first in what we hope will be a series on the topic, with both parents and researchers weighing in, to increase awareness about research at Seattle Children’s.

Katelyn and Jennifer MhyreAs biomedical researchers, my husband and I are both very invested in the research process. Our daughter, Katelyn, has a disease that is incurable, but we are optimistic that her participation in various research studies could have a positive impact on not only her life, but also on the lives of other children in the future. Nevertheless, we take each opportunity to participate in a study under thoughtful consideration before signing our consent.

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Seattle Children’s receives designation as first Level IV neonatal intensive care unit in Washington

NICU newbornThe Washington State Department of Health has designated the neonatal intensive care unit (NICU) at Seattle Children’s Hospital as a Level IV regional NICU, which is the highest level of care available for critically ill newborns. Seattle Children’s is the first hospital in Washington state to receive this designation.

The new designation of Seattle Children’s NICU follows the recent revision of the state’s Perinatal and Neonatal Level of Care Guidelines by the Department of Health in February 2013. The revision is in line with the updated American Academy of Pediatrics (AAP) standards for NICUs that were outlined in September 2012.

The guidelines define four levels of care: normal newborn nursery (level I), special care nursery for premature and mildly ill newborns (level II), neonatal intensive care for very premature and critically ill newborns that sometimes offer select surgical procedures (level III), and regional NICU with comprehensive services to treat all medical and surgical problems of newborns (level IV). Read full post »

Facebook not so cool anymore, teens say, but they’ll still use it

Facebook homepage

Teens have waning enthusiasm for Facebook, according to the latest “Teens, Social Media, and Privacy” report from the Pew Internet & American Life Project. “They dislike the increasing number of adults on the site, get annoyed when their Facebook friends share inane details, and are drained by the ‘drama’ that they described as happening frequently on the site,” the report’s authors said.

But these same teens still feel a need to stay on Facebook so that they don’t miss out on anything – a conclusion that is not a surprise to Megan Moreno, MD, who leads the Social Media and Adolescent Health Research Team at Seattle Children’s Research Institute. Moreno and her team’s recently-published Facebook influence study details why young people will still stick with the social networking site, despite it losing a bit of its appeal.

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Parent cultural attitudes, beliefs associated with child’s media viewing habits

Child watching television

Differences in parental beliefs and attitudes regarding the effects of media on early childhood development may help explain the increasing racial/ethnic disparities in child media viewing/habits, according to a new study by Wanjiku Njoroge, MD, of Seattle Children’s Research Institute.

The findings support national research that preschool-aged children spend considerable time with media, a situation that brings both risks and benefits for cognitive and behavioral outcomes depending on what is watched and how it is watched. A 2006 Kaiser Family Foundation media study, for example, highlighted that ethnically/racially diverse children—specifically African American, Hispanic and Asian children—watch more television than non-Hispanic white children. Read full post »

Big data moves towards action to improve scientific research, health

Delsa logo

The announcement last week that 70 medical, research and advocacy groups in 41 countries—including the National Institutes of Health—agreed to share genetic and clinical information made headlines across the country. But to many already working in the “big data” realm, the news is just a welcome addition to the momentum of global projects and alliances already in motion.

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Lung transplant debate highlights need for more organ donors

Organ transplantWith two high-profile pediatric transplant cases making headlines recently, many people are paying closer attention to organ donation. Simon Horslen, MB ChB, medical director for liver and intestinal transplantation at Seattle Children’s Hospital, hopes the current debate will be a good boost for organ donation. The real issue, he says, is that there are not enough donors for everyone who needs an organ.

Horslen has cared for transplant patients for years, and he sympathizes with parents who are fighting for their kids to have a chance at life. But he notes that organ donation guidelines exist for a reason.

“It’s right that the families of these kids do everything they can to advocate for their children,” says Horslen. “But it’s a bad precedent if every time someone gets to the bottom of the list or is going to struggle to get transplanted, that they go to the courts to challenge it.” Read full post »

Flushing out new cures for intestinal disease

People with good digestion

You can’t blame Patient #1 for not wanting to share his name; he’d rather not be known as the guy who swallowed poop in the name of science.

But he does want you to know he is willing to go to extremes to help find a cure for Crohn’s disease, an autoimmune disorder that causes severe abdominal symptoms and robs his body of nutrients.

It’s not as crazy as it sounds. Fecal microbiota transplantation (that’s right – fecal, as in feces, as in poop) is a tried-and-true treatment for recurrent bouts of Clostridium difficile infection (or C. diff), a dangerous intestinal bacteria.

It works by repopulating the intestinal tract with “good” bacteria, which are often wiped out by the antibiotics used as the first line of defense against C. diff. Read full post »

Exploring the gray area in the bioethics of clinical trials

Stethoscope

People are more comfortable with black and white, and less so with gray. This isn’t a reference to artwork, but rather the way that things work in the world. There is right and wrong, left and right, and one side of the fence, or the other.

“Gray” happens in medicine and quite frequently in the realm of bioethics, the study of ethical and moral implications of new biomedical discoveries, advances and new and not-so-new procedures. When clinicians grapple with whether an organ transplant should be performed over a family’s objections, for example, that is bioethics.

Alabama-led study under scrutiny

In March, a federal agency known as the Office for Human Research Protections notified the University of Alabama that it was not compliant with U.S. Department of Health and Human Services regulations for the protection of human research subjects. UAB was the lead investigator in this study, which included 23 institutions, among them Stanford, Duke, Emory and Yale.

HHS said the risks of the study, which compared the effect of two different oxygen levels in babies’ blood, were not properly communicated to the parents of some 1,300 infants in the permissions forms and that the risks included blindness, neurological damage and death. The study was conducted between 2004 and 2009, and results were published in 2010. Read full post »

Couple turns their big day into a big gift for kids

Marc and Shaquita_print Dishes, silverware, small appliances, sheets, towels. Home essentials like these appear on nearly all wedding gift registries. But for Shaquita Bell, MD, a primary care pediatrician at Seattle Children’s, and her fiance, Marc Stamm Boyer, giving their wedding guests a wish list of stuff for themselves just didn’t feel right.

“We are at a point in our lives where we have the things we need and the things we want,” says Boyer. “It seemed silly to say, ‘Hey, you know how we have all this silverware? We should totally get some more.’”

But knowing that guests might insist on giving a gift, they put their heads together to come up with another option: “registering” for donations to Seattle Children’s.

“If our guests want to spend money on our wedding, we’d rather it go toward something inherently good,” says Boyer. Read full post »