The proposed study (ECCHO-NFGS) provides an unprecedented opportunity to understand mechanisms of in utero exposures on risk of childhood outcomes of public health significance. The data are of the highest quality, are the most detailed serial assessments of fetal development available in any cohort. We will demonstrate our ability to engage children and standardize our research protocols to address our hypotheses (UG3) and follow this cohort prospectively for future risk assessment (UH3). The NFGS is the ideal cohort to assess the prenatal determinants of two key health outcomes ? obesity and neuroimpairment as well as be a resource for the ECHO Consortium for all four outcome focus areas.
This study is for patient that have been diagnosed with suspected lower respiratory tract infection. The purpose of this study is to evaluate a new test that may be able to find more lung infections than current tests can. This new test is called next-generation sequencing and looks in respiratory secretions for bacteria, viruses, fungi, and other organisms that may cause infection. We hope to learn more about the usefulness of this new test in identifying infections.
The purpose of this study is to understand factors contributing to managing emotions, behavior problems, and substance use risk among girls. Middle school adolescent girls will be asked about their thoughts and feelings about themselves and their ethnic group, perceptions, and discrimination. They will also report on their behavior and substance use risk. Their reactions to recent incidents of unfair treatment or disciplinary action will also be assessed.
The purpose of this research protocol is to collect information about individuals living with sickle cell disease to help improve the care of those patients. We hope to understand more about the disease itself, the best ways to treat the disease, and the best ways to help patients with sickle cell disease get care. The goal is to have clinical information about every person diagnosed with sickle cell disease in South Carolina so that we can better treat the disease and help develop new ways to improve outcomes.
We will combine state-of-the-art brain imaging techniques in 140 Single Ventricle Reconstruction Trial (SVR) III patients and 100 control subjects with innovative brain connectome or "graph" analyses to determine if brain connectivity graph measurements will provide novel neuroimaging biomarkers for neurodevelopmental disabilities and improve our understanding of their inciting mechanisms in the SVR survivors. Only 6 of the SVR III patients and no controls will be enrolled at MUSC.
This study will consist of hour long focus groups or interviews with parents or legal guardians of children with asthma. The goal of this research is to determine barriers and challenges that parents face regarding daily asthma medication adherence. We also seek to identify success stories of parents who have been able to achieve high levels of medication adherence in their children and what factors might have facilitated this success. We will use the results of this study for the future development of an intervention that uses individual patient medication history to assess and communicate risk to providers and families in order to improve asthma medication adherence and reduce preventable Emergency Department visits and Hospitalizations.
Transforming health care and outcomes for children with rare diseases is difficult within the current health care system. There is great variation in care delivery, inadequate and slow application of existing evidence, and ineffective use of available data to generate new knowledge. Individual care centers have inadequate numbers of patients for robust learning and improvement. In order to redesign the system, changes must take place at multiple levels, including the patient and family, clinician, practice and the network. The purpose of this project is to design, develop, and test further refinements to an improvement and research network focused on HLHS, the most severe congenital heart defect, and to use a registry to simultaneously improve clinical care, redesign care delivery systems and to conduct quality improvement, health services, outcomes, and comparative effectiveness research. The purpose of this initiative, specifically, is to improve care and outcomes for infants with HLHS by: 1) expanding the established NPC-QIC national registry to gather clinical care process, outcome, and developmental data on infants with HLHS between diagnosis and 12 months of age, 2) improving implementation of consensus standards, tested by teams, into everyday practice across pediatric cardiology centers, and 3) engaging parents as partners in improving care and outcomes. We utilize a quality improvement methodology, known as the adapted learning collaborative model, which expedites the implementation of tools and strategies that facilitate changes such as systematic care coordination, cardiovascular monitoring, and nutritional monitoring into every day practice. The NPC-QIC registry is used to document the impact of these changes on various care processes and outcomes (e.g., mortality rate, readmissions, and weight gain).
In the past, many patients have been referred to a FHS participant site for evaluation and treatment of maternal or fetal abnormalities. Until recently, most studies regarding maternal or fetal disease have been single-center studies. Many maternal and fetal abnormalities are exceedingly rare. Due to the relative rarity of many forms of fetal congenital malformations, little collective short- and long-term data on outcomes exist. The Fetal Heart Society aims to collect data on a large cohort of patients and improve best clinical practice and improve outcomes for rare diseases.
The purpose of this study is to understand factors contributing to managing emotions, behavior problems, and substance use among girls. Middle school adolescent girls will be asked about their thoughts and feelings about themselves and their ethnic group, perceptions, and discrimination. They will also report on their behavior and substance use. Their reactions to recent incidents of unfair treatment or disciplinary action will also be assessed.
The purpose of the study is to assess and qualify the clinical phenotype as well as adequately classify the motor component of the X-linked MCT8 transporter deficiency syndrome by performing neurological exams and MRI imaging of subjects with the MCT8 transporter deficiency and MRI imaging of age matching control patients. A total of 12 well-documented MCT8 deficiency patients and 20 age matching control subjects are expected to be recruited over a two year period fo this proposed study.