Gendered Racial Factors in Girls? Self-Regulation, Drug, and Behavior Disparities Save

Date Added
November 1st, 2016
PRO Number
Pro00060638
Researcher
Colleen Hallidayboykins
Keywords
Adolescents, Children's Health, Education, Healthy Volunteer Studies, Mental Health, Minorities, Substance Use, Women's Health
Summary

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.

Institution
MUSC
Recruitment Contact
Jennifer Powell
843-876-0567
smithjl@musc.edu

South Carolina Sickle Cell Disease Access to Care Pilot Program (SC) Save

Date Added
July 19th, 2016
PRO Number
Pro00054236
Researcher
Julie Kanter washko
Keywords
Adolescents, Blood Disorders, Children's Health, Infant
Summary

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.

Institution
MUSC
Recruitment Contact
Katherine Williams-Turner
843-876-0821
willkat@musc.edu

Single Ventricle Reconstruction III: Brain Connectome and Neurodevelopmental Outcomes Save

Date Added
July 14th, 2016
PRO Number
Pro00056838
Researcher
Andrew Atz
Keywords
Children's Health
Summary

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.

Institution
MUSC
Recruitment Contact
Anna Tecklenburg
843-792-1213
tecklenb@musc.edu

Translating the Asthma Medication Ratio into a Point of Care Risk Assessment and Communication Tool Save

Date Added
June 23rd, 2016
PRO Number
Pro00054731
Researcher
Anne Lintzenich
Keywords
Asthma, Children's Health
Summary

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.

Institution
MUSC
Recruitment Contact
Erin Dawley
843-792-2542
hintone@musc.edu

National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) - A Collaborative Initiative to Improve Care of Children with Complex Congenital Heart Disease Save

Date Added
June 23rd, 2016
PRO Number
Pro00056522
Researcher
Frances Woodard
Keywords
Cardiovascular, Children's Health, Heart, Infant, Non-interventional
Summary

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).

Institution
MUSC
Recruitment Contact
Frances Woodard
843-792-3292
klinefl@musc.edu

Retrospective and Prospective Data Collection of Maternal, Fetal, and Neonatal Variables from Patients Referred to Fetal Heart Society Participant Centers with a Maternal or Fetal Abnormality Aff ecting the Fetal Cardiovascular System. (Fetal Heart Society Collaborative Research Database Project) FHS Protocol Number 001 Save

Date Added
April 18th, 2016
PRO Number
Pro00054603
Researcher
Carolyn Taylor
Keywords
Children's Health, Pregnancy
Summary

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.

Institution
MUSC
Recruitment Contact
Kalyan Chundru
843-792-1213
choudhar@musc.edu

A Family-Centered Self-Management Program for Young Children with Sickle Cell Disease: Phase I Save

Date Added
March 22nd, 2016
PRO Number
Pro00053576
Researcher
Shannon Hudson
Keywords
Blood Disorders, Children's Health, Infant, Pediatrics
Summary

This study tests an intervention to help children with sickle cell disease ages 0-7 years and their families. The intervention is available on a smartphone or tablet, and includes an app for keeping track of symptoms and text messaging with a health care provider. Participants are needed to briefly review the intervention and provide feedback.

Institution
MUSC
Recruitment Contact
Shannon Phillips
843-792-9379
phillipss@musc.edu

Gendered Racial Factors in Girls? Self-Regulation, Drug, and Behavior Disparities Save

Date Added
February 2nd, 2016
PRO Number
Pro00051830
Researcher
Colleen Hallidayboykins
Keywords
Adolescents, Children's Health, Education, Healthy Volunteer Studies, Mental Health, Minorities, Substance Use, Women's Health
Summary

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.

Institution
MUSC
Recruitment Contact
Jennifer Powell
843-876-0567
smithjl@musc.edu

Validation of the Pediatric Awareness and Sensory Motor Assessment (PASMA) Save

Date Added
December 1st, 2015
PRO Number
Pro00048514
Researcher
Cynthia Dodds
Keywords
Brain, Children's Health, Hearing, Vision/ Eye
Summary

The purpose of this project is to study validity of a newly developed pediatric tool, the Pediatric Awareness and Sensory Motor Assessment (PASMA), which will measure cognitive awareness for children with severe brain damage. Thirty children, between the ages of 3-21 years, with physician-documented severe brain damage and considered medically stable are needed for this study. Recruitment flyers will be disseminated at HMS School in Philadelphia, PA, iHope (school serving children with severe disabilities) in NY, NY, MUSC and the greater Charleston area community to recruit parents/legal guardians of children with severe brain damage. Once parental/legal guardian and physician consents are in place, participants will be evaluated using the PASMA 5 times within 10 days. The PASMA is made up of 5 domains that are olfactory, visual, auditory and vestibular, gustatory, and tactile. Test administration requires approximately 1 hour and can be completed in settings convenient for parents/legal guardians. The potential benefit to study participants is that the findings from the PASMA may identify sensory and motor strengths of participants. Knowledge of these strengths may enhance current rehabilitation and treatment plans, which may lead to functional improvements; although, this cannot be guaranteed. It is a goal of this study to evaluate PASMA validity. Once validity has been substantiated for the PASMA by means of further study, future children with severe brain injury, being evaluated with the PASMA, may have rehabilitation and treatments opportunities that are better informed, leading to greater improvement in functional and participatory outcomes.

Institution
MUSC
Recruitment Contact
Cynthia Dodds
843-792-5731
doddscb@musc.edu

Role of White Matter Tracts and Gray Matter Centers in X-linked MCT8 Transporter Deficiency, Assessed by Dedicated Magnetic Resonance Imaging and Clinical Correlation Save

Date Added
November 3rd, 2015
PRO Number
Pro00048044
Researcher
Maria Matheus
Keywords
Adolescents, Brain, Children's Health, Healthy Volunteer Studies, Pediatrics
Summary

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.

Institution
MUSC
Recruitment Contact
Corie Lynn
843-792-8874
lynnc@musc.edu

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