A Mixed Methods Approach to Symptom Clusters in Black Women with Heart Failure Preserved Ejection Fraction: A Feasibility Study

Date Added
August 7th, 2020
PRO Number
Pro00101261
Researcher
Alexandra Ruppe

List of Studies

Keywords
Cardiovascular, Ethnicity and Disease, Heart, Minorities, Non-interventional, Shortness of Breath, Women's Health
Summary

This study aims to explore symptoms for Black women with heart failure using surveys and interviews. Black women have not been included in the majority of heart failure research. It is important that Black women have a voice and the ability to share their symptom experience. The goal of this research is to study clusters of heart failure symptoms in Black women to eventually improve symptom education, monitoring, and treatments.

Institution
MUSC
Recruitment Contact
Alexandra Ruppe
8034176635
moseleal@musc.edu

A Phase 2a, Open-label, Single-arm, 2-Part Study to Evaluate the Efficacy, Safety, and Pharmacokinetics of VX‐147 in Adults with APOL1-mediated Focal Segmental Glomerulosclerosis

Date Added
July 21st, 2020
PRO Number
Pro00099956
Researcher
Roberto Pisoni

List of Studies

Keywords
Drug Studies, Genetics, Kidney, Minorities, Rare Diseases
Summary

The study is an open-label study to determine the safety and efficacy of VX-147-101 in subjects who have APOLI dependent FSGS. The study comprises three periods: screening, treatment, and follow-up. The study includes a screening visit to determine if you have the APOLI gene. Participation in this study will last approximately 17 weeks. Participants may choose to participate in an off-treatment observation for up to 12 additional weeks.

Institution
MUSC
Recruitment Contact
Linda Walker
843-792-6109
walkerlp@musc.edu

Building Up a Diverse Pipeline for the Biomedical Research Workforce

Date Added
July 7th, 2020
PRO Number
Pro00097445
Researcher
Michael de Arellano

List of Studies

Keywords
Minorities
Summary

Objective: To build the knowledge base of evidence-based interventions that diversify the workforce using near-peer and peer mentoring via group mentoring.

Institution
MUSC
Recruitment Contact
Claudia Salazar
843-792-8698
salazarc@musc.edu

A Study of the Prevalence of Apolipoprotein L1(APOL1) Alleles Among Individuals With Proteinuric Kidney Disease Who Are of Recent African Ancestry or Geographic Origin

Date Added
June 9th, 2020
PRO Number
Pro00098923
Researcher
Roberto Pisoni

List of Studies

Keywords
Genetics, Kidney, Minorities, Rare Diseases
Summary

The purpose of the study is to test to see if people with Focal Segmental Glomerulosclerosis (FSGS) have a genetic mutation (changes in DNA) so we can learn more about this disease. FSGS is a disease in which scar tissue develops on the parts of the kidneys that filter waste out of the blood. The FSGS in potential participants will be identified through previous kidney biopsy results in medical records and previous urine sample analysis results. The study will also help find people with a genetic mutation who may be interested in participating in future research studies.

Institution
MUSC
Recruitment Contact
Marcie Pregulman
843-792-8166
pregulma@musc.edu

ATHN 9: A Natural History Cohort Study of the Safety, Effectiveness, and Practice of Treatment for People With Severe Von Willebrand Disease (VWD)

Date Added
January 27th, 2020
PRO Number
Pro00092790
Researcher
Stephanie Ambrose

List of Studies

Keywords
Adolescents, Blood Disorders, Children's Health, Circulation, Dental, Genetics, Infant, Joint, Men's Health, Minorities, Muscle, Non-interventional, Nose, Obstetrics and Gynecology, Pain, Pediatrics, Periodontal Disease, Rare Diseases, Rheumatoid, Surgery, Women's Health
Summary

ATHN 9 is a natural history study to assess the safety of various Von Willebrand Factor (VWF) regimens for different indications (on-demand, surgery and prophylaxis) in adult and pediatric participants with clinically severe congenital VWD.

Institution
Palmetto
Recruitment Contact
Shannon Cearley
803-434-4088
shannon.cearley@prismahealth.org

Characterization of patient-, provider-, and clinic-level factors associated with implementation, clinical outcomes, and sustainability of diabetes remote patient monitoring

Date Added
January 3rd, 2020
PRO Number
Pro00094517
Researcher
Elizabeth Kirkland

List of Studies

Keywords
Diabetes, Hypertension/ High Blood Pressure, Minorities
Summary

The purpose of this formative research is to explore and understand patient-, provider-, and systems-level characteristics that affect the sustainability and success of remote patient monitoring technology applied to diabetes chronic care. This will be completed through evaluation and analysis of the Technology Assisted Case Management in Low Income Adults with Type 2 Diabetes (TACM-2) implementation program. TACM-2 utilizes remote patient monitoring (RPM) of diabetes and hypertension to augment regular clinical care, with the ultimate goal of improving health outcomes particularly for low-income patients regardless of geographic location.

This exploratory study's broad goal is to characterize key barriers and facilitators to RPM use over time through a mixed methods design. We will utilize data gathered as part of an ongoing quality improvement program, TACM-2, to provide quantitative data on RPM uptake and effectiveness. We will also obtain qualitative and quantitative data from participating patients and healthcare teams. Our objectives are to assess:
1) patient-level variables that are associated with sustained device use and clinical outcomes over time,
2) patterns of device uptake and data transmission across South Carolina as markers of scalability and sustainability, and
3) patient-, clinic- and system-level barriers and facilitators of RPM implementation.

Institution
MUSC
Recruitment Contact
Ryan Kruis
843-792-4703
kruis@musc.edu

Identifying functional regulatory marks underlying monocyte dysfunction in scleroderma

Date Added
February 19th, 2019
PRO Number
Pro00085936
Researcher
Paula Ramos

List of Studies

Keywords
Autoimmune disease, Ethnicity and Disease, Genetics, Healthy Volunteer Studies, Immune System, Inflammation, Minorities, Scleroderma, Women's Health
Summary

Scleroderma (systemic sclerosis) is a chronic autoimmune disease, characterized by dysregulation of immune cells in the blood and subsequent fibrosis and vascular dysfunction, associated with significant mortality and morbidity, disproportionately affecting women and African Americans, and without satisfactory treatments. Monocytes, a type of blood immune cells, are critically involved, but the mechanisms responsible for their deregulation in scleroderma remain largely unknown. The goal of this project is to understand how the regulation of monocytes differs between scleroderma and healthy individuals. Volunteers will be asked to provide a blood sample, for which modest compensation will be provided. This is not a drug study.

Institution
MUSC
Recruitment Contact
Tyler Malone
843-792-5935
malonety@musc.edu

Stress Reactivity among African American Breast Cancer Survivors

Date Added
October 19th, 2018
PRO Number
Pro00060958
Researcher
Chanita Hughes-Halbert

List of Studies

Keywords
Cancer/Breast, Inflammation, Minorities
Summary

Outcomes following a breast cancer diagnosis are different by race and ethnicity with African American women having poorer survival compared to Caucasian women. Research has shown that differences in personal health factors can contribute to breast cancer outcomes and explain racial differences. This study will examine how personal-level factors relating to biological, psychological, and physiological issues play a role in outcomes among African American breast cancer survivors.

Institution
MUSC
Recruitment Contact
Melanie Jefferson
843-876-2430
sweatma@musc.edu

Neural Determinants of Age-Related Change in Auditory-Visual Speech Processing

Date Added
September 24th, 2017
PRO Number
Pro00070971
Researcher
James Dias

List of Studies

Keywords
Aging, Brain, Central Nervous System, Ears, Healthy Volunteer Studies, Hearing, Language, Minorities, Vision/ Eye
Summary

Older adults typically have trouble identifying the speech they hear, especially in noisy environments. Fortunately, compared to younger adults, older adults are better able to compensate for difficulties identifying the speech they hear by recruiting the visual system. However, the extent to which older adults can benefit from visual input, and how this influence relates to age-related changes in brain structure and function, have not been thoroughly investigated. The general purpose of this study is to determine how age-related changes in brain structure and function affect how well people hear and see. This study seeks participants with normal hearing to mild hearing loss, who also have normal or corrected-to-normal vision.

Institution
MUSC
Recruitment Contact
James Dias
(843) 792-3921
diasj@musc.edu

CureGN: Cure Glomerulonephropathy Network

Date Added
December 2nd, 2014
PRO Number
Pro00038759
Researcher
Katherine Twombley

List of Studies

Keywords
Adolescents, Children's Health, Disease Prevention, Kidney, Minorities, Pediatrics
Summary

Adult and Pediatric patients with glomerular disease:
Patients of all ages are needed to participate in a research study to investigate glomerular disease and create a worldwide database to help in the research and future treatment of this disease. To join this study, you must have a type of glomerular disease, have had a first kidney biopsy within the last 5 years, not be on dialysis, or not have had a kidney transplant.

The study is projected to last 4 years, and all study procedures will be done at regular clinic visits (between 1 and 3 yearly). Study procedures include filling out questionnaires and a blood draw at each visit.

Compensation is available for study participation.

Institution
MUSC
Recruitment Contact
Lauren Card
843-792-5935
cardl@musc.edu



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