Editor’s Note: Genetic counselors interpret genetic test results to guide and support patients seeking information about their personal and family health. They can take a variety of roles, from meeting with patients in a hospital or clinical care setting, to working in a diagnostic laboratory, to performing primary research. In this guest blog, Sarah Raible, MS, CGC, a senior genetic counselor and clinical director of the Center for Cornelia de Lange Syndrome and Related Diagnoses Center within the Roberts Individualized Medical Genetics Center (RIMGC) at Children’s Hospital of Philadelphia, discusses how genetic counselors’ unique contributions and insights are helping to shape the future of precision medicine.
Tag Archive: guest blog
Editor’s Note: After over five years of discussion from the advance notice of proposed rulemaking and two implementation delays, it appears that changes to the Common Rule regulations overseeing human subjects research (45 CFR 46) are finally set to go into effect Jan. 21. Heather Cathrall, MBE, CIP, assistant director of Institutional Review Board (IRB) Operations at Children’s Hospital of Philadelphia, explains what researchers need to know about the revised Common Rule. Protecting human participants in biomedical research is a top priority at CHOP Research Institute, and the IRB team is revising its electronic IRB system, standard operating procedures, templates, and webpage to comply with these new regulations. Also, the IRB is leading a series of trainings for CHOP investigators, study staff, IRB members, and IRB staff.
Editor’s Note: It’s an exciting time for the Center for Parent and Teen Communication (CPTC) at Children’s Hospital of Philadelphia. The Center launched a new website, www.parentandteen.com, offering timely, easy to understand articles, videos, podcasts, slideshows, quizzes, and more for both parents and teens. For parents and caregivers, topics include: developmental forces that shape adolescent behavior, strategies for improving parent-teen communication, avenues for supporting character strengths that lead to a successful life, and best approaches for disciplining and monitoring. We took the opportunity to ask Kenneth Ginsburg, MD, MSEd, co-founder and director of programs for the CPTC, to tell us more about the Center and its research efforts.
Editor’s Note: Our guest blogger, Lindsay Waqar, MPH, CCRC, is the lead clinical research coordinator for the Division of Rheumatology at Children’s Hospital of Philadelphia. In this guest blog, she describes a collaborative quality improvement project presented at the Eighth Annual CHOP Quality and Safety Day between her research team and clinical fellows’ team to improve communication and research recruitment across the division.
What happens when researchers and clinicians team up to improve the identification of eligible research patients newly diagnosed with a chronic condition? Areas of change are discussed, low effort/high impact interventions are implemented, and research recruitment rates improve. This was the goal of the Division of Rheumatology’s fellow quality improvement project for FY18.
Editor’s Note: Childhood brain tumors remain some of the most difficult to treat cancers, especially because of current therapies’ long-term side effects for the survivors. In honor of Brain Tumor Awareness Month, Adam Resnick, PhD, director of the Center for Data-Driven Discovery in Biomedicine (D3b) at Children’s Hospital of Philadelphia, is our guest blogger. He brings us up to date on how the CHOP-led consortia, working with patients, families, and partnering institutions, has witnessed first-in-kind initiatives and innovative clinical trials aimed at personalized, precision-based approaches for brain tumors that are redefining the scientific landscape of research and therapeutic translation.
Editor’s Note: In his career as a social psychologist, Douglas Hill, PhD, focuses on understanding how parents, children, and healthcare providers think about and cope with stressful health situations. For the past six years, Dr. Hill has worked with an interdisciplinary team in the lab of Chris Feudtner, MD, PhD, MPH, on research topics including hopeful thinking among parents of children with serious illness, regoaling, good parent beliefs, coping skill interventions for parents, barriers to initiation of palliative care among pediatric oncologists, the impact of pediatric illness on families, and identifying pediatric patients who are unable to communicate.
Editor’s Note: As PolicyLab’s 10th anniversary as a Center of Emphasis within Children’s Hospital of Philadelphia Research Institute arrives in 2018, we invited Director David Rubin, MD, MSCE, and Deputy Director Meredith Matone, DrPH, MHS, to reflect on PolicyLab’s progress and future directions. Read on to get a glimpse of the four inventive research portfolios that will achieve the Center’s “research-to-action” goals.
Editor’s Note: Our guest blogger, Ayana Bradshaw, MPH, is the administrative director for the Center for Injury Research and Prevention and the Violence Prevention Initiative at Children’s Hospital in Philadelphia, serving in this role for the past five years. She joined CIRP in 2006 as the center coordinator for the Philadelphia Collaborative Violence Prevention Center where she was responsible for the day-to-day operations of a Centers for Disease Control and Prevention violence prevention program.
After four years of often being the only female student in a class, entering a medical school felt like a gender nirvana. My medical school, like most, had equal numbers of men and women. But despite my initial impression of gender equity, I realized that there are still gender obstacles in medicine.