A Single-Site, Mixed-Methods Study Identifying Barriers and Facilitators to Genetic Counseling Referral among Patients with Hypermobile Ehlers-Danlos Syndrome

Date Added
October 5th, 2026
PRO Number
Pro00151523
Researcher
Alyssa Hill

List of Studies

Keywords
Arthritis, Autoimmune disease, Bladder, Bone, Bowel, Cardiovascular, Central Nervous System, Children's Health, Digestive System, Ethnicity and Disease, Fibromyalgia, Genetics, Heart, Immune System, Inflammation, Inflammatory Bowel Disease, Joint, Lupus, Minorities, Movement Disorders, Muscle, Nerve, Nervous System, Pain, Pediatrics, Physical Therapy, Rare Diseases, Rheumatoid, Stomach, Stress Disorders
Summary

This research study aims to better understand patient experiences with accessing genetic counseling services for hypermobile Ehlers-Danlos syndrome (hEDS). The study will include a review of MUSC medical records to better understand referral patterns to genetic counseling services among patients with hEDS. Patients with hEDS will also be asked to complete a survey about their experiences with accessing genetic counseling services. Healthcare providers will be asked to complete a separate survey about their experiences referring patients with hEDS to genetic counseling services and potential factors that may influence the referral process. The surveys will take approximately 10-15 minutes to complete.

There are minimal risks to participants but may include possible loss of confidentiality or discomfort when answering questions related to healthcare experiences. There is no direct benefit to participants, but the information provided may help improve access to genetic counseling services for future patients with hEDS. Participation in the surveys is completely voluntary.

Institution
MUSC
Recruitment Contact
Alyssa Hill
3159552243
hillsu@musc.edu

Digital Wellness Nurse – FIT Families: Virtual Family Intervention for Adolescent Obesity

Date Added
June 13th, 2025
PRO Number
Pro00144641
Researcher
Mohan Madisetti

List of Studies


Keywords
Adolescents, Exercise, Minorities, Nutrition, Weight Control
Summary

The purpose of this study is to test whether a mobile app, the Digital Wellness Nurse (DWN), can help families with weight problems lead healthier lifestyles. Participants in this study will receive education and tips on physical activity and healthy eating through weekly videos and online meetings with a community health worker (CHW) via the DWN app. The meetings with the CHW will take place once a week for 12 weeks. During these meetings, adolescents and their caregiver will set weekly goals and have the chance to earn incentives for meeting them. While in the study, participants will be asked to wear a Fitbit to track physical activity and to complete a monthly survey about eating and physical activity habits. At the end of the study, participants will be asked to participate in a focus group and talk about their experiences with the app and the study. Participation in this study may improve physical well-being, but that cannot be guaranteed.

Institution
MUSC
Recruitment Contact
Jennifer Powell
843-876-0926
smithjl@musc.edu

Comparing Standard of Care Versus a Technology-Based Approach To Reduce Postpartum Emergency Department Visits

Date Added
November 7th, 2023
PRO Number
Pro00130902
Researcher
Constance Guille

List of Studies


Keywords
Mental Health, Minorities, Obstetrics and Gynecology, Post Partum Depression, Pregnancy, Psychiatry, Women's Health
Summary

This study compares the effectiveness of in-person versus virtual delivery of an evidence-based intervention to reduce rates of postpartum emergency department visits. The purpose of the study is to learn if a program for newborn mom's can improve detection of complications after delivery and help women get medical care quickly and easily. Participants will be asked to complete a survey at the time of enrollment and at 4 additional times. All surveys can be completed via cell-phone or email. All women will be followed for 1-year after delivery. Women that enroll will be assigned to one of two groups: usual in person care OR usual in-person care PLUS a text message-based program that will ask about signs and symptoms of complications that may occur after delivery. If there is a concern, a care coordinator will call on the phone to discuss options and help refer to care if needed. Participants will be paid for their time in completing surveys.

Institution
MUSC
Recruitment Contact
Isabella Dubnicka
843-998-5635
hear4mamas@musc.edu

Comparing Standard of Care Versus a Technology-Based Approach To Reduce Postpartum Emergency Department Visits

Date Added
November 7th, 2023
PRO Number
Pro00130902
Researcher
Constance Guille

List of Studies


Keywords
Mental Health, Minorities, Obstetrics and Gynecology, Post Partum Depression, Pregnancy, Psychiatry, Women's Health
Summary

This study compares the effectiveness of in-person versus virtual delivery of an evidence-based intervention to reduce rates of postpartum emergency department visits. The purpose of the study is to learn if a program for newborn mom's can improve detection of complications after delivery and help women get medical care quickly and easily. Participants will be asked to complete a survey at the time of enrollment and at 4 additional times. All surveys can be completed via cell-phone or email. All women will be followed for 1-year after delivery. Women that enroll will be assigned to one of two groups: usual in person care OR usual in-person care PLUS a text message-based program that will ask about signs and symptoms of complications that may occur after delivery. If there is a concern, a care coordinator will call on the phone to discuss options and help refer to care if needed. Participants will be paid for their time in completing surveys.

Institution
MUSC Health Kershaw Medical Center
Recruitment Contact
Isabella Dubnicka
843-998-5635
hear4mamas@musc.edu

Comparing Standard of Care Versus a Technology-Based Approach To Reduce Postpartum Emergency Department Visits

Date Added
November 7th, 2023
PRO Number
Pro00130902
Researcher
Constance Guille

List of Studies


Keywords
Mental Health, Minorities, Obstetrics and Gynecology, Post Partum Depression, Pregnancy, Psychiatry, Women's Health
Summary

This study compares the effectiveness of in-person versus virtual delivery of an evidence-based intervention to reduce rates of postpartum emergency department visits. The purpose of the study is to learn if a program for newborn mom's can improve detection of complications after delivery and help women get medical care quickly and easily. Participants will be asked to complete a survey at the time of enrollment and at 4 additional times. All surveys can be completed via cell-phone or email. All women will be followed for 1-year after delivery. Women that enroll will be assigned to one of two groups: usual in person care OR usual in-person care PLUS a text message-based program that will ask about signs and symptoms of complications that may occur after delivery. If there is a concern, a care coordinator will call on the phone to discuss options and help refer to care if needed. Participants will be paid for their time in completing surveys.

Institution
MUSC Health Columbia Medical Center
Recruitment Contact
Isabella Dubnicka
843-998-5635
hear4mamas@musc.edu

Comparing Standard of Care Versus a Technology-Based Approach To Reduce Postpartum Emergency Department Visits

Date Added
November 7th, 2023
PRO Number
Pro00130902
Researcher
Constance Guille

List of Studies


Keywords
Mental Health, Minorities, Obstetrics and Gynecology, Post Partum Depression, Pregnancy, Psychiatry, Women's Health
Summary

This study compares the effectiveness of in-person versus virtual delivery of an evidence-based intervention to reduce rates of postpartum emergency department visits. The purpose of the study is to learn if a program for newborn mom's can improve detection of complications after delivery and help women get medical care quickly and easily. Participants will be asked to complete a survey at the time of enrollment and at 4 additional times. All surveys can be completed via cell-phone or email. All women will be followed for 1-year after delivery. Women that enroll will be assigned to one of two groups: usual in person care OR usual in-person care PLUS a text message-based program that will ask about signs and symptoms of complications that may occur after delivery. If there is a concern, a care coordinator will call on the phone to discuss options and help refer to care if needed. Participants will be paid for their time in completing surveys.

Institution
MUSC Health Orangeburg
Recruitment Contact
Isabella Dubnicka
843-998-5635
hear4mamas@musc.edu

Comparing Standard of Care Versus a Technology-Based Approach To Reduce Postpartum Emergency Department Visits

Date Added
November 7th, 2023
PRO Number
Pro00130902
Researcher
Constance Guille

List of Studies


Keywords
Mental Health, Minorities, Obstetrics and Gynecology, Post Partum Depression, Pregnancy, Psychiatry, Women's Health
Summary

This study compares the effectiveness of in-person versus virtual delivery of an evidence-based intervention to reduce rates of postpartum emergency department visits. The purpose of the study is to learn if a program for newborn mom's can improve detection of complications after delivery and help women get medical care quickly and easily. Participants will be asked to complete a survey at the time of enrollment and at 4 additional times. All surveys can be completed via cell-phone or email. All women will be followed for 1-year after delivery. Women that enroll will be assigned to one of two groups: usual in person care OR usual in-person care PLUS a text message-based program that will ask about signs and symptoms of complications that may occur after delivery. If there is a concern, a care coordinator will call on the phone to discuss options and help refer to care if needed. Participants will be paid for their time in completing surveys.

Institution
MUSC Health Florence Medical Center
Recruitment Contact
Isabella Dubnicka
843-998-5635
hear4mamas@musc.edu

Comparing Standard of Care Versus a Technology-Based Approach To Reduce Postpartum Emergency Department Visits

Date Added
November 7th, 2023
PRO Number
Pro00130902
Researcher
Constance Guille

List of Studies


Keywords
Mental Health, Minorities, Obstetrics and Gynecology, Post Partum Depression, Pregnancy, Psychiatry, Women's Health
Summary

This study compares the effectiveness of in-person versus virtual delivery of an evidence-based intervention to reduce rates of postpartum emergency department visits. The purpose of the study is to learn if a program for newborn mom's can improve detection of complications after delivery and help women get medical care quickly and easily. Participants will be asked to complete a survey at the time of enrollment and at 4 additional times. All surveys can be completed via cell-phone or email. All women will be followed for 1-year after delivery. Women that enroll will be assigned to one of two groups: usual in person care OR usual in-person care PLUS a text message-based program that will ask about signs and symptoms of complications that may occur after delivery. If there is a concern, a care coordinator will call on the phone to discuss options and help refer to care if needed. Participants will be paid for their time in completing surveys.

Institution
MUSC Health Lancaster Medical Center
Recruitment Contact
Isabella Dubnicka
843-998-5635
hear4mamas@musc.edu

Health Education Approach to Lung Screening (HEALS)

Date Added
August 29th, 2023
PRO Number
Pro00130682
Researcher
Marvella Ford

List of Studies


Keywords
Cancer, Lung, Minorities
Summary

The Southeastern Consortium for Lung Cancer Health Equity (SC3), led by Dr. Robert A. Winn, assembles an outstanding interdisciplinary team of translational researchers positioned in the heart of the historical and current tobacco-producing region within the southeast. Collectively, SC3's investigative team has unparalleled experience in lung cancer screening, translational research in lung cancer health disparities, community outreach and engagement, and recruiting and retaining racial and ethnic minorities and individuals from other medically underserved groups using evidence-based strategies. As NCI-designated cancer centers, all three centers report high enrollment of underserved minorities onto interventional trials and are committed to reducing the substantial disparities found in lung cancer outcomes in their collective Black/African American and rural communities.

Institution
MUSC
Recruitment Contact
Ellen Gomez
8438762428
gomezel@musc.edu

Self-Management for Youth Living with Sickle Cell Disease: SMYLS Multi-site Trial

Date Added
April 4th, 2023
PRO Number
Pro00127137
Researcher
Shannon Phillips

List of Studies


Keywords
Adolescents, Blood Disorders, Minorities, Pain, Pediatrics, Rare Diseases
Summary

The purpose of this study is to find out whether a web-based intervention using a mobile app is helpful for teens and young adults with sickle cell disease (SCD) in learning how to care for and manage their symptoms. 272 teens and adults with SCD will be enrolled in this study which is being conducted at the Medical University of South Carolina in Charleston SC., East Carolina University in Greenville NC., University of Miami in Miami FL., and the University of Alabama in Birmingham AL.

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



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