KEEP IT (Keeping Each Other Engaged via IT): An Innovative Digital Literacy Training Program for Community Health Workers about Hereditary Breast and Ovarian Cancer among Black Women

Date Added
January 13th, 2022
PRO Number
Pro00116925
Researcher
Caitlin Allen

List of Studies


Keywords
Cancer/Breast, Genetics
Summary

The purpose of this study is to develop, deliver, and evaluate the KEEP IT (Keep Each Other Engaged via IT) CHW Training to increase resources and support for identifying Black women at risk for hereditary breast and ovarian cancer (HBOC). My goals are to conduct focus groups with community health workers to identify topics of interest for the initial curriculum, use a three-round Delphi process to refine and finalize an educational curriculum for CHWs focused on building trainee's digital health literacy to enhance identification and navigation of Black women at high-risk for HBOC, and to use implementation science methods to deliver and evaluate the educational training program consisting of a 1.5-day virtual workshop followed by five online modules.

Aim 1: Conduct focus groups with up to 10 community health workers to explore the topics that need to be covered as part of the KEEP IT training.

Aim 2: Use a three-round Delphi process to refine and finalize an educational curriculum for CHWs focused on building trainee's digital health literacy to enhance identification and navigation of Black women at high-risk for HBOC

Aim 3: Use implementation science methods to deliver and evaluate the educational training program consisting of a 1.5-day virtual workshop followed by five online modules

Institution
MUSC
Recruitment Contact
Caitlin Allen
873-792-4216
allencat@musc.edu

Multicenter Phenotype-Genotype Analysis of Vascular Anomalies and Related Syndromes

Date Added
December 24th, 2021
PRO Number
Pro00116848
Researcher
Lara Wine Lee

List of Studies


Keywords
Genetics, Pediatrics, Skin, Vascular
Summary

The purpose of this research study is to develop a better understanding of the cause and natural history of vascular anomalies and related syndromes. This study is being done in order to develop a better understanding of the cause of vascular anomalies in order to to improve care for people who are affected by these anomalies and related syndromes.

This study is being done at the University of Wisconsin-Madison (UW-Madison) and other sites in North America and Europe. A total of about 1000 people will participate in this study. About 20 – 30 people will take part in the study here at the Medical University of South Carolina.

Institution
MUSC
Recruitment Contact
Chelsea Shope
8437549577
shopec@musc.edu

In Our DNA SC: A Helix Research Network Study

Date Added
October 19th, 2021
PRO Number
Pro00115183
Researcher
Daniel Judge

List of Studies


Keywords
Genetics, Healthy Volunteer Studies
Summary

The purpose of this project is to study DNA and its connection to your health. DNA is in your blood, your saliva, and other tissues in your body. DNA is the unique instructions you are born with that tells your body how to work. By looking at DNA, you can learn information about your health, certain traits, and even your ancestral roots. DNA is also called your genetic information. DNA is mostly the same from person to person. But everyone's DNA is slightly different. We are still learning how DNA impacts health. The study will look at the DNA of many different people from many different backgrounds and compare it to information in their health records. The goal is to understand how learning about DNA can help improve health care for individuals, families, and the community. Participants will provide a sample for DNA sequencing. Sequencing is the process of reading the letters of your DNA. This study may sequence your whole genome. Over time, you may be asked to provide additional samples for research purposes. The research team will collect health information about you from your medical record and may ask you questions about your health using surveys or other data collection methods

Institution
MUSC
Recruitment Contact
Joseph Baierl
(843) 876-0582
InOurDNASC@musc.edu

An Open-Label, Tolerability and Efficacy Study of ZYN002 Administered as a Transdermal Gel to Children and Adolescents with 22q11.2 Deletion Syndrome

Date Added
October 1st, 2021
PRO Number
Pro00114473
Researcher
Caroline Buchanan

List of Studies

Keywords
Genetics
Summary

The Drug Product ZYN002 is a transdermal CBD gel. CBD is the primary non-euphoric cannabinoid contained in the Cannabis sativa L. plant. The CBD contained within ZYN002 is a pharmaceutically produced Active Pharmaceutical Ingredient (API) that is chemically identical to the CBD present in Cannabis. ZYN002 is currently being evaluated in clinical trials in children and adolescents with Fragile X Syndrome (FXS), autism spectrum disorder, 22q11.2 deletion syndrome, and developmental and epileptic encephalopathies. The present protocol for ZYN2-CL-031 (INSPIRE) is designed to evaluate the safety and tolerability of ZYN002 in the treatment of 11q11.2 Deletion Syndrome. Enrolled participants will be treated for a 1-14 week period and then further evaluated for continuation. Those eligible will be able to continue in the open-label study for an additional 24 weeks of treatment.

Institution
Self Regional
Recruitment Contact
Sarah English
18646726912
senglish@ggc.org

Social factors, epigenomics, and lupus in African American women (SELA)

Date Added
August 17th, 2021
PRO Number
Pro00112945
Researcher
Paula Ramos

List of Studies