Dr. Mogomotsi Matshaba, a clinician and researcher at the Botswana-Baylor Children’s Clinical Center of Excellence in Gaborone, Botswana.
Seattle Children’s Research Institute’s mission to prevent, treat and eliminate childhood disease extends far beyond the Pacific Northwest or even the United States. Researchers like Dr. Jason Mendoza, of the institute’s Center for Child Health, Behavior and Development, are advocating for vulnerable patients all over the world. Mendoza recently led a global health research study in Botswana, published in the Journal of Acquired Immune Deficiency Syndromes, to find out if inadequate access to food, also called food insecurity, might be associated with worse health outcomes of HIV-positive children in Sub-Saharan Africa.
Studying patients with the greatest need
HIV is a major public health problem in Sub-Saharan Africa. In 2012, there were 3.3 million children worldwide, under the age of 15, living with HIV. Of those, 2.9 million were in Sub-Saharan Africa. Botswana has one of the highest HIV rates of countries in this region, with 23% of adults (ages 15 to 49) infected. Additionally, from 2010 to 2012, 27.9% of people in Botswana did not have physical or economic access to enough nutritious food to maintain a healthy, productive lifestyle. Read full post »
The teen years can be difficult– you’re fighting for your independence but still trying to develop an identity. And your 20s come with their own obstacles, like going to college, starting a career and living on your own. Can you imagine facing those developmental milestones while injecting yourself with insulin or enduring chemotherapy?
Dr. Abby Rosenberg, medical leader for Seattle Children’s Hospital’s Adolescent and Young Adult Cancer program, and Dr. Joyce Yi-Frazier, research health psychologist at Seattle Children’s Research Institute, have seen teens with cancer and type 1 diabetes struggle physically and psychosocially. Adolescents and young adults with cancer are less likely to achieve social milestones like college, marriage, and employment and more likely to suffer from anxiety and post-traumatic stress. Likewise, teens with type 1 diabetes struggle to control their blood sugar levels and are more likely to be depressed.
“The teen and young adult years are a critical time of transition for anyone,” Rosenberg said. “When you add a serious illness to the mix, you are asking patients to do extraordinarily hard things. We want to help them integrate the experience into their identity so they are not only surviving, but thriving.”
An intervention model
To help patients, Rosenberg and Yi-Frazier worked together on the Promoting Resilience in Stress Management (PRISM) study. PRISM is an intervention model designed to teach patients resilience – the ability to maintain psychological and physical well-being in the face of stress – to buffer the impact of serious illness. Read full post »
As new technologies have emerged, Seattle Children’s Research Institute has kept pace, studying various social media channels and considering how these impact adolescent health.
To share their exciting work with the community, the research institute’s Social Media & Adolescent Health Research Team (SMAHRT) is hosting its first annual conference July 31 through Aug. 2. The conference, titled “Using Social Media To Improve Health, Catalyze Research and Empower Communities,” will address how social media can lead to both problematic behaviors – like overuse of the internet – or positive actions, like increased fitness.
“We know social media has some risk but we also know there are some benefits to using these tools,” said Dr. Megan Moreno, principal investigator of SMAHRT within the Center for Child Health, Behavior and Development at Seattle Children’s. “We want to figure out how to make online experiences more positive.”
The conference will include panel discussions as well as an “Appy Hour” in which attendees will have a chance to use Fitbit activity trackers, experience iPad health screenings and try an app used to help patients decide on birth control methods. It is intended for teachers, educators, families, health care providers, researchers, child health advocates, public health practitioners, and members of the legal, business, technology, and journalism communities. Read full post »
The Treuman Katz Center for Pediatric Bioethics was the first of its kind in the United States, created 10 years ago along with an annual conference. The tenth annual Pediatric Bioethics Conference will be held later this month, and will bring together renowned leaders in the field of pediatric bioethics to discuss various ethical issues faced by researchers daily.
“Our conferences expose attendees to new perspectives and new ways of thinking,” said Dr. Douglas Diekema, director of education at the Treuman Katz Center.
Some of the topics that will be discussed at this year’s conference include:
- Parents of seriously ill children are often desperate for new therapies, even if in early phase trials. Is truly voluntary consent possible in such a situation?
- Social media allows researchers to “eavesdrop” on adolescent behavior. Should there be constraints on this type of investigation?
- Is it ever acceptable to conduct research in developing countries that would be considered inappropriate in the United States?
- If hospitals set up biobanks for research, what is needed to ensure public trust?
Read full post »
Dr. Raphael Bernier
A researcher at Seattle Children’s Hospital and Research Institute, in collaboration with researchers from 13 institutions worldwide, has found a genetic identifier for autism that includes physical features and a pattern of symptoms that may eventually allow clinicians to develop targeted treatments or ultimately potentially identify babies who are at risk for autism before they are born.
Dr. Raphael Bernier, clinical director of Seattle Children’s Autism Center and Associate Professor at the University of Washington, discovered that a mutation of the CHD8 gene, in addition to significantly increasing a child’s risk of developing a specific subtype of autism, also causes several unique physical traits.
We had the opportunity to chat with Bernier and ask him how this discovery will impact children and families.
Read full post »
A new study reports infants eating a typical diet consume unsafe levels of phthalates, man-made chemicals used in plastics that can interfere with growth and brain development.
Dr. Sheela Sathyanarayana, a Seattle Children’s Research Institute environmental medicine expert, co-authored a study that compiled data from 17 international studies measuring phthalate (pronounced thall-eight) exposure in different foods. Diet is believed to be the greatest source of phthalate exposure. Foods are likely contaminated with these chemicals through packaging and processing materials, Sathyanarayana said.
The study, published in Environmental Health, found the typical diet of infants over 6 months old who are eating solid foods contains an unsafe level of phthalates. In contrast, the typical diets consumed by women of a childbearing age and adolescents did not contain unsafe levels of these toxins. Read full post »
Seattle Children’s Research Institute adolescent medicine expert Dr. Rachel Katzenellenbogen.
Nearly all men and women in the United States are infected with human papillomavirus (HPV) during their lives, putting them at greater risk of developing life-threatening cervical, anal, vaginal, penile, throat and tongue cancers. But, what if it was possible to stop these cancers from developing?
The National Cancer Institute has awarded Seattle Children’s Research Institute adolescent medicine expert Dr. Rachel Katzenellenbogen more than $2 million to research that possibility. She is studying what happens in the body between the time of HPV infection and cancer development in search of opportunities to intervene and prevent malignant disease.
“There are generations of people who did not get the HPV vaccine or got vaccinated after they were already exposed to HPV,” Katzenellenbogen said. “Those people could still develop cancer. We need to understand their disease process if we are going to help them.” Read full post »
Kathia Vega Flores, 18, was diagnosed with lupus when she was 11 years old. She has had to take toxic medications to manage her disease.
Kathia Vega Flores will never forget the way her friends and family reacted when she came home from a month-long hospital stay at age 11: They did not recognize her.
Kathia had been diagnosed with lupus, a lifelong disease that causes inflammation throughout the body. The medications used to control her disease caused Kathia’s body to swell. She couldn’t walk without assistance. She was often dizzy and nauseous. In total, Kathia was taking 20 pills each day.
“The medications changed me a lot,” she said. “It was very hard. I just wanted to get back to my normal routine of going to school and seeing my family without upsetting them.”
Lupus is most commonly diagnosed in teenage girls, but half of a million people in the United States are living with it. The disease can lead to rashes, fevers, enlarged lymph nodes, psychoses, seizures and inflammation of the heart, lungs or brain.
Roadblocks on the road to cures
Dr. Anne Stevens, a research expert at Seattle Children’s Research Institute, has been treating lupus patients at Seattle Children’s for 25 years. Despite the great advances experts like her have made studying the immune system, lupus is still treated with toxic medications like chemotherapy and steroids because of a lack of funding for pediatric research. Read full post »
Dr. Douglas Hawkins is the chair of the COG study
At the American Society of Clinical Oncology (ASCO) Annual Meeting, Children’s Oncology Group (COG) researchers presented promising findings from an international study that has identified a new therapy for treating rhabdomyosarcoma, a common childhood cancer. The therapy has fewer harsh side effects, meaning it lessens the chance of infections, need for blood transfusions and infertility later in life.
“Although we did not improve the cure rate, we are excited that we have identified a therapy that was as effective as standard treatment, but has fewer harmful side effects,” said Dr. Douglas Hawkins, chair of the COG study and associate division chief of Hematology/Oncology at Seattle Children’s Hospital. “Most children are cured of this cancer, and so we want to limit not only the side effects they experience during treatment, but also reduce the side effects that affect long-term health.”
Read full post »
Baby Molly Hamilton.
On Feb. 17, 2008, Erin and Bill Hamilton welcomed their daughter Molly into the world. She appeared to be a perfectly healthy, 9-pound baby girl, but a newborn screening test revealed Molly had cystic fibrosis.
“We were devastated,” Erin said. “We didn’t know anything about cystic fibrosis and had no idea how this disease would affect her life.”
Dr. Bonnie Ramsey, a national leader in cystic fibrosis research.
Cystic fibrosis is an inherited condition that affects about 30,000 people in the United States. It causes thick, sticky mucus to build in the lungs, digestive tract and other areas of the body. It’s also a disease that has become the life’s work of Dr. Bonnie Ramsey, director of the Center for Clinical and Translational Research at Seattle Children’s Research Institute.
In 1938, when cystic fibrosis was first recognized as a disease, babies with this condition rarely lived past one year. Thanks to researchers like Ramsey, children with this disease can now live comfortably into adulthood.
“It is so rewarding to see how research impacts the lives of these children,” Ramsey said. “My goal is to keep conducting research studies until there are successful treatments for all patients with cystic fibrosis.” Read full post »