Like or follow CPCE on   Facebook ,   Twitter ,   and   LinkedIn
Spotlight on: Cardiology Research

The National Cardiovascular Data Registry’s (NCDR) IMPACT Registry™ (IMproving Pediatric and Adult Congenital Treatment) is a multicenter clinical registry designed to track outcomes for pediatric and adult patients undergoing cardiac catheterization procedures for congenital heart disease in the United States. The primary purpose of the IMPACT Registry™ is to improve patient care by promoting quality improvement at participating institutions. The collection and analysis of this data allows for significant contributions to the knowledge and outcomes associated with congenital heart disease.

Practice variation, or measuring the range of practice patterns across a set of hospitals, has become an important measure of quality across many fields of medicine. Reducing variability in practice has been shown to improve both resource utilization and traditional patient outcomes for pediatric patients with congenital heart disease. Although practice variability has been described among a smaller number of centers for specific types of congenital cardiac catheterization procedures, to date no studies have attempted to quantify community-level practice variation for more common interventions in this field. 

Using data from the IMPACT registry, Andrew Glatz, MD, MSCE ; Michael O’Byrne, MD, MSCE ; and colleagues sought to measure variation in the practice of balloon aortic valvuloplasty (BAV) and balloon pulmonary valvuloplasty (BPV). These are well-established procedures and, as such, one might reasonably expect there to be relatively stable practice patterns between hospitals. However, this research found measurable hospital-level variation in the practice of BAV and BPV. Additional research is needed to determine the effect this variation has on outcome and resource use, and ultimately whether reducing practice variation actually improves either.

This publication was recently featured on the podcast Pediheart: Pediatric Cardiology Today . In this episode host Dr. Robert Pass speaks with Dr. Glatz about some of the interesting aspects of his work as well as trying to answer the question of whether 'homogenizing' our approach to a somewhat 'heterogeneous' group of patients makes good sense.
Upcoming Events
Methodology Spotlight: Mobile Health Intervention Optimization 
Date: June 5, 2018
Time: 12:00 pm - 1:30 pm
Location: Roberts Center for Pediatric Research, Room 1-120B
Mobile devices facilitate our ability to deliver supportive treatments anytime and anywhere. A critical question in the optimization of mobile health interventions is: "When and in which contexts, is it most useful to deliver treatments to the user?" This question concerns time-varying dynamic moderation by the context of the effectiveness of the treatments on user behavior. This session will explore the micro-randomized trial design and associated data analyses for use in assessing moderation.
Find more information or register online here.

Webinar: Playing Catch-up -- How to Address US’ Lag in Reducing Child Mortality Rates
Date: June 5, 2018
Time: 1:00 pm – 2:30 pm EST
Health policy stakeholders, government agency staff, child health policy advocates, elected officials, and healthcare providers are invited to join a webinar entitled “Playing Catch-up -- How to Address US’ Lag in Reducing Child Mortality Rates.” The Center for Injury Research and Prevention at CHOP is hosting a 90 minute webinar to identify the underlying causes of mortality in children under age 1 and adolescents 15-19 years, discuss the three major contributing factors driving the lag in US child mortality rates, and discuss the evidence-based policies which should be implemented to address these issues. Find additional information about the speaker & panelists or register online here

Save the Date: Clinical Trials RAG Seminar
Date: June 12, 2018
Time: 12:00 pm - 1:00 pm
Location: Roberts Center for Pediatric Research, Room 2160
L. Charles Bailey, MD, PhD, attending physician in the Cancer Center and academic investigator in clinical informatics at CHOP will be discussing PEDSnet, and how it can be leveraged for clinical trials.

Penn MSHP 2018 Implementation Science Institute
Dates: June 19 - 21, 2018
Location: Jordan Medical Education Center
The purpose of the Implementation Science Institute is to provide participants with the tools to design and execute rigorous implementation science research. The Institute will give an introduction to the foundations of implementation science, cover implementation strategies and sustainability, tips for grant writing and skill development. Limited scholarships will be available for affiliates of CHOP. Register here or contact mshp@mail.med.upenn.edu for more information.

Conference: Code Red: Battling the Plague of Gun Violence
Date: June 21, 2018
Time: 8:00 am – 3:30 pm
Location: Thomas Jefferson University, Hamilton Building, 1001 Locust Street, Connelly Auditorium, Philadelphia
A day-long conference to educate about gun violence and create a network of health care providers committed to policy solutions. With keynote addresses from David Hemenway, Professor, Harvard School of Public Health & Allison Anderman, Managing Attorney, Giffords Law Center to Prevent Violence. Register online.
CPCE in
the News!
Recent Publications
Phase-contrast magnetic resonance imaging (PC-MRI) accurately quantifies blood flow and velocity in a noninvasive manner in patients with congenital heart disease. However, patients with congenital heart disease may require intravascular stenting of obstructed vessels and there are limited data regarding the accuracy of PC-MRI in the vicinity of stents. Dr. Andrew Glatz and colleagues sought to determine the accuracy of PC-MRI flow measurements in the vicinity of stents composed of a variety of clinically used materials. They concluded that PC-MRI flows are highly accurate just upstream and downstream of a variety of clinical used stents, support its use to directly measure flows in stented vessels.  

Neuromyelitis optica spectrum disorder (NMOSD) is a rare, immune-mediated inflammatory disorder of the central nervous system. Despite the life-threatening consequences of uncontrolled disease activity, there are no validated treatment strategies for NMOSD. Small, open label and retrospective studies have reported benefits of rituximab in NMOSD, but the effectiveness and safety of rituximab for NMOSD remains unclear. CPCE researchers conducted a retrospective cohort study to determine the impact of rituximab on all-cause re-hospitalization for children and young adults with NMOSD. Although they found that first-line rituximab was not associated with a decreased risk of or time to all-cause re-hospitalization, it use was associated with a decreased duration of rehospitalization, suggesting its possible role in mitigating the severity of disease relapses. Further research is needed to determine the long-term effects of first-line rituximab on morbidity and mortality. 

The incidence of pediatric kidney stones (nephrolithiasis) has increased dramatically over the last 25 years. Prior studies have reported associations between antibiotic exposure and diseases such as inflammatory bowel disease and asthma, thought to be mediated by disruption of the human microbiome. Recent studies have reported differences in the composition of the intestinal microbiome between patients with and without nephrolithiasis, indicating that it is biologically plausible that antibiotics may increase the risk of nephrolithiasis. New research from CPCE faculty members found that that children and adults treated with some oral antibiotics were at increased risk of developing kidney stones. This research advances what we already know about how antibiotics can alter the composition of the microbiome, and it supports our investigators’ efforts to reduce children’s exposure to unnecessary antibiotics. 

Suicide ideation (SI) and suicide attempts (SAs) have been reported as increasing among US children over the last decade. New research from Dr. Stephanie Doupnik and colleagues showed that encounters for SI and SA at US children’s hospitals increased steadily from 2008 to 2015 and accounted for an increasing percentage of all hospital encounters. The growing impact of pediatric mental health disorders has important implications for children’s hospitals and health care delivery systems.

Adults with differentiated thyroid carcinoma (DTC) and Graves Disease (GD) demonstrate a greater reported disease burden and aggressive DTC behavior. To date, no studies have examined the impact and long-term outcome of concurrent GD and DTC (GD-DTC) in pediatric and young adults. Research from Dr. Goli Mostoufi-Moab and colleagues found that concurrent DTC in pediatric GD patients is not associated with a greater disease burden at presentation and shows no significant difference in 2-year outcomes compared to DTC alone.

Infants ≤60 days old are at increased risk of bacterial infections because of exposure to bacterial pathogens in the perinatal period and lack of vaccine-induced immunity. New research from Dr. Fran Balamuth and colleagues in the Febrile Young Infant Research Collaborative aims to help guide empiric treatment of infants ≤60 days old with suspected invasive bacterial infection by describing pathogens and their antimicrobial susceptibilities. Understanding the epidemiology of invasive bacterial infections in young infants could inform the selection of empiric antimicrobials while awaiting bacterial culture results in infants with suspected bacterial infection. 

Funding Opportunities
The Robert Wood Johnson Foundation has issued a Request for Proposals for its Evidence for Action: Making Health a Shared Value program. The purpose of the program is to improve the foundation's understanding of the Action Area 1 drivers and outcomes related to health, well-being, and equity, particularly with respect to disadvantaged children and families. To that end, the foundation seeks evidence on the extent to which Action Area 1 drivers — mindsets and expectations, sense of community, and civic engagement — can be changed through intervention at the individual or population levels, resulting in better health, well-being, and equity outcomes.

The Mark Foundation for Cancer Research funds groundbreaking research that integrates discoveries in biology with innovative technology to deliver breakthroughs to patients. To advance this mission, the foundation is inviting proposals for its Emerging Leaders Awards program, which provides support to early-career investigators engaged in high-impact, high-risk cancer research. Through the annual program, the foundation will award three-year grants of $750,000. 

The Children’s Cardiomyopathy Foundation is accepting Letters of Intent from investigators for basic science, clinical, population/epidemiologic, and translational research on cardiomyopathies affecting children age 18 and younger. Grants of up to $50,000 will be awarded to studies focused on the causes, diagnosis, or treatment of dilated, hypertrophic, restrictive, arrhythmogenic right ventricular, and left ventricular non-compaction cardiomyopathy. The grants are designed to provide seed funding to help secure long-term funding by the National Institutes of Health and other major granting institutions.

Through the FWW Research Awards program, the foundation will award grants of up to $25,000 for research projects, with an emphasis on cardiovascular disease, female cancers, the role of hormones in disease, and/or stage-of-life health concerns such as pregnancy and menopause and diseases disproportionately affecting women. 

The Rheumatology Research Foundation is accepting applications for its 2018 Scientist Development Award, an annual program designed to provide support for a structured, formal, clinical, or basic science research training program for rheumatologists or health professionals in the field of rheumatology. Grants of up to $225,000 for up to three years will be awarded to individuals in the early stages of their careers or those without significant prior research experience who plan to embark on a career in biomedical and/or clinical research in arthritis and rheumatic diseases. 

The National Institute for Health Care Management Foundation is a nonprofit, nonpartisan organization dedicated to improving the effectiveness, efficiency, and quality of the U.S. healthcare system. To that end, the foundation is inviting Letters of Inquiry for its Investigator-Initiated Health Services Research Grants program. The foundation will award seven or eight grants totaling $400,000. Priority will be given to studies that address issues of broad significance for the U.S. healthcare system and that have high potential to produce timely results and reach key target audiences.

The American Legion Child Welfare Foundation supports organizations that contribute to the physical, mental, emotional, and spiritual welfare of children. The foundation awards grants for the dissemination of information about new and innovative programs designed to benefit youth or information already possessed by well-established organizations. Projects must have the potential to help American children in a large geographic area (more than one state).

Last year, the NIH received approximately $30 billion in federal support. In spite of this amount, about 42,500 grants were not funded. To address these unfunded proposals, the NIH has a new Pilot Program that is designed to match researchers with nonprofit disease Foundations or with investments from private companies. Through a new collaboration between the NIH and the private contractor Leidos, researchers can now upload their unfunded NIH Proposals into an online portal at the Online Partnership to Accelerate Research (OnPAR). Foundations and other potential funders can review the NIH scores, and decide whether they might be interested in funding the Projects. Currently, this Pilot Program allows researchers with priority scores better than the 30th percentile to submit their abstracts. Interested Foundations might ask that a researcher send their full NIH Application along with its scores. The consensus opinion is that there are a lot of worthy grants being submitted to the NIH, but there is only so much funding available. OnPAR is one way of trying to match researchers with private Foundations. 
About CPCE
We are a pediatric research center dedicated to discovering and sharing knowledge about best practices in pediatric care by facilitating, organizing and centralizing the performance of clinical effectiveness research -- research aimed at understanding the best ways to prevent, diagnose and treat diseases in children. CPCE’s multidisciplinary team conducts research on a diverse range of clinical effectiveness topics grouped within four areas of research: