The Arcus team at the Research Institute is solving a number of challenges at once: Decrease the time it takes for researchers to access data, increase the reproducibility of research, ensure data security, and speed up the rate of breakthroughs. Will Struebing loves that his role as supervisor of Scientific Computing for the Department of Biomedical and Health Informatics (DBHi) pulls him in many directions. In this fourth in a series of Cornerstone posts about the convergence of talent and expertise to build Arcus — an internal program that is providing findable, reusable, trustworthy research data — find out more about Struebing and how his DevOps team is enabling cloud-first development efforts.
Category Archive: Department of Biomedical and Health Informatics
Start new collaborations. Find valuable data. Create cohorts that can seed new research endeavors. These are some of the key drivers for Arcus, an internal strategic program designed for researchers to more intuitively navigate clinical and research data produced by Children’s Hospital of Philadelphia and the Research Institute. Essentially, that means making the promising wealth of data in Arcus discoverable.
In this Cornerstone post, meet Spencer Lamm, MLIS, supervisor of Library Science within the Department of Biomedical and Health Informatics (DBHi), who is adopting standards and practices for managing large volumes of data at places like NASA to make the new Arcus Archives a source of reliable, reproducible data for CHOP researchers long-term.
By Jillian Rose Lim, Nancy McCann, Barbara Drosey, and Sharlene George
Editor’s Note: Where Discovery Leads is a multimedia storytelling project that delves into key research themes at CHOP Research Institute. This is part one of a three-part series that focuses on novel diagnostic tools and approaches being developed under the leadership of the Center for Autism Research at CHOP. See part 2 and part 3 of the series.
By Nancy McCann
Editor’s Note: Where Discovery Leads is a multimedia storytelling project that delves into key research themes at CHOP Research Institute. This is part two of a three-part series that focuses on novel diagnostic tools and approaches being developed under the leadership of the Center for Autism Research at CHOP. See part 1 and part 3 of this series.
A child’s diminished response to hearing his or her name has long been recognized as a red flag for autism spectrum disorder (ASD), and now researchers have developed a phone app to quantitatively measure this behavior as a way to help screen for this complex neurodevelopmental diagnosis.
Arcus is a unique data environment that will one day host many research data sets from Children’s Hospital of Philadelphia, all of which will have their own formats and regulatory requirements. As a research data privacy analyst for Arcus, Dianna Reuter, JD’s, goal is to build a house where all of those data sets — whether they’re related to human subjects research, or genomic studies, or come from abroad and are subject to other countries’ privacy laws — can have a home that is accessible but stays secure to protect privacy.
Editor’s Note: Families facing a rare disease diagnosis often do not know where to turn first in their search for the most advanced treatments and potentially a cure for their children. Only 5 percent of rare diseases have a treatment approved by the Food and Drug Administration, according to the National Organization for Rare Disorders. This is due in part to the lack of high quality biospecimens for research.
Around seven years ago during a well visit at Children’s Hospital of Philadelphia, a 12-year-old boy told Saba Khan, MD, an attending physician at CHOP, that there was one problem she could not fix. Intrigued, Dr. Khan asked him to explain further. At first hesitant, the young man finally explained what he meant. He had a pain in his belly that never went away, and he knew exactly what that pain was: Hunger. “I’m always hungry,” he said to Dr. Khan.
Dr. Khan was floored. At the time, she was unfamiliar about how to address the issue of food insecurity because she had not yet encountered it in primary care practice.
Nobody enjoys sitting in a doctor’s waiting room, especially when they have an uncomfortable skin condition. A Children’s Hospital of Philadelphia study team tested a direct-to-consumer mobile app designed to facilitate routine dermatologic consultations for children and adolescents. The pilot study results showed the telemedicine technology was acceptable, easy to use, and expedited care.
The end of the year has come up fast, and so have important advances in pediatric research at Children’s Hospital of Philadelphia. This week’s In the News starts off with a celebration of two remarkable patients and their dedicated pediatric oncologist.
August is perfect for lazy summer days, but our pediatric research news never rests. So whether you’re lounging by the pool or relaxing in a shady hammock, pull up In the News to find out the science that is hot at The Children’s Hospital of Philadelphia.