The Clinical and Community Resource Core (CCR Core) will build on the success of the currently funded CCCR (FORMERLY MCRC). Since 2012, the CCCR (FORMERLY MCRC) Patient Resource Core has served the needs of its projects as well as a local, national and international base by maintenance of well-characterized/phenotyped longitudinal cohorts of lupus and scleroderma patients and controls. A formal survey of the research base indicated a strong continued need for existing services. The survey responses indicated that the needs extended beyond current services, and will do so as follow: First, more chronologic specimens will be collected over multiple years and specimens of patients with specific phenotypes (scleroderma interstitial lung disease and lupus nephritis) and genotypes. Second, coordinator support will be provided to facilitate collection of fresh specimens and assist with regulatory support. Finally, the core will provide translational scientists with consultation about engagement with the community, study design, and feasibility.
Clinical and Community Resource Core Leadership and Staff
Jim Oates, M.D., Associate Director and Professor, Division Rheumatology and Immunology, Vice Chair for Research and Reporting for the Medical University Health Authority
As Director of the Clinical and Community Resource Core (CCR Core), Dr. Oates will supervise all aspects of the CCR Core and will serve as a consultant on Aim 4. His oversight will include request fulfillment, informatics build (with Dr. Obeid), health record phenotype process implementation with clinicians, coordination of team activities, and oversight of administrative issues, data entry, and quality control (with the Methodologic Core).
Edwin Smith, M.D., Professor, Division of Rheumatology and Immunology
Dr. Smith has extensive experience in diagnosis, treatment and research in SSc and Raynaud phenomenon, including recruiting subjects for both basic research and clinical trials. He is expert in the classification and phenotyping of SSc patients. He is Co-Director of the current CCCR (FORMERLY MCRC) Patient Resource Core and has been the MUSC Site PI of the CLEAR (Consortium for the Longitudinal Evaluation of African Americans with Rheumatoid Arthritis) for the past decade. He has the experience and expertise as a scientific team leader and administrator required to serve as Associate Director and in succession as the Director of the Clinical and Community Resource Core (CCR Core). He will be involved in the design of the health record phenotype project for SSc patients, will complete diagnostic and activity forms for his SSc patients and patients of other clinicians not supported by the CCR Core. He will continue his ongoing participation in the systemic sclerosis research group to promote the recruitment and retention of those subjects and will serve as a consultant on Aim 4.
Diane Kamen, M.D., Associate Professor, Division of Rheumatology and Immunology, and Lead Investigator of MUSC Lupus Erythematosus (MUSCLE) translational research group
Dr. Kamen is an expert in validated measures of SLE activity, outcome and quality of life. She is a member of the Lupus Foundation of America Medical-Scientific Advisory Council, Systemic Lupus International Collaborating Clinics (SLICC), Lupus Clinical Trials Consortium (LCTC) and Lupus Clinical Investigator Network (LuCIN). Her research focuses on environmental and genetic causes of health disparities among patients with SLE. Importantly for this project, she has been a member of the Sea Islands Citizen Advisory Committee. She will serve as leader of the Community Engagement service in Aim 3 and a consultant on Aim 4.
Edith Williams, Ph.D., Assistant Professor,Department of Public Health Sciences
Dr. Williams has expertise in community-based participatory research, patient reported outcomes, social determinants of health, and patient engagement for improved health behaviors, particularly in African-Americans with SLE. She has collaborated extensively with Drs. Oates and Kamen and will be a consultant resource for Community Engagement Services in Aim 3.
Chanita Hughes-Halbert, Ph.D., Professor of Psychiatry & Behavioral Sciences, AT&T Endowed Chair for Cancer Equity in the Hollings Cancer Center, Director of the Special Populations Program of MUSC’s CTSA, and Director of the MUSC Center for Health Disparities Research
A nationally recognized expert in minority health and health disparities, Dr. Hughes-Halbert's research examines barriers and facilitators to minority participation in clinical and community-based research for health promotion and disease prevention. Previously, her research examined the effects of alternate dissemination strategies in minority populations. She is the PI of a new NIH U54 grant for the MUSC Transdisciplinary Collaborative Center in Precision Medicine and Minority Men’s Health. She will be a consultant resource for Community Engagement Services in Aim 3.
Jihad Obeid, M.D., Professor for Biomedical Informatics, Departments of Public Health Sciences and Psychiatry & Behavioral Sciences, Associate Director of the Biomedical Informatics Center (BMIC) in the South Carolina Clinical & Translational Research Institute (SCTR)
Dr. Obeid collaborates extensively with Dr. Oates to develop the informatics support for the current CCCR (FORMERLY MCRC). Dr. Obeid is formally trained in Medical Informatics at the Division of Health Sciences and Technology, a joint Harvard-MIT fellowship program funded by the National Library of Medicine. He is involved in multiple major Clinical and Translational Science Award (CTSA) Informatics initiatives such as, the Clinical Data Warehouse (CDW), i2b2, REDCap, Profiles, Doxy.me tele-consent and many others. For this project, he will collaborate with Dr. Oates as the BMIC lead to complete the informatics requirements of this project.
Daniel Melcher, Lead Study Coordinator
Mr. Melcher will ensure that the CCR Core operates according to timelines specified within the grant application and by CCCR Biorepository Requests. He oversees all IRB submissions and compliance issues, assists in recruiting and consenting subjects by attending rheumatology clinics where patients with SLE and SSc are seen, manages questionnaires (electronic and paper) and clinical collection forms in EPIC EMR and quality control in REDCap, schedules subject testing as needed, and interface with the biorepository for sample collection needs. He also manages the work fulfillment and feasibility of requested services from other investigators (recruitment assistance, specimen/clinical data requisition, protocol development, etc.) and reports to Dr. Oates on progress.
Jonathan Flume, Data Coordinator
Mr. Flume currently serves as the data coordinator in the CCCR (FORMERLY MCRC), and he is adept in quality control procedures, use of REDCap and Epic reporting/chart review. He will work with the Lead Coordinator, Methodologic Core and the Informatics staff to ensure that all clinical data collected are accurately recorded and filed securely. He will adjudicate data from the Data Transfer System into REDCap. He will assist the Lead Coordinator with clinical data collection as time permits. He also will create feasibility reports for investigators.
Katie Kirchoff, Systems Architect and Programmer/Analyst
Ms. Kirchoff will play a critical role in implementing the Informatics vision proposed for the CCRC. As a member of the BioMedical Informatics Center (BMIC) of SCTR, she will benefit from the extensive informatics team experience in this SCTR Core. She will work initially on user analysis, broad systems design, underlying data infrastructure and data dictionaries, interfaces between REDCap, biorepository, SNPs, Clinical Data Warehouse, the research data mart, and i2b2. She will create the DTS mapping for the new fine phenotype and survey data in Epic to REDCap. She also will help in the design and implementation of the research participant recruitment and just-in-time sample acquisition design. She will provide help desk support for i2b2.
Jacqueline Lipscomb, Sample Technician
Ms. Lipscomb has previously worked in the Department of Pathology & Laboratory Medicine and is currently the CCCR (FORMERLY MCRC) sample technician. She will maintain the existing and incoming inventory of samples for the CCR Core biorepository, update sample locations in TissueMetrix, ensure that freezers have preventive maintenance and adequate CO2 backup and functioning alarms, and will pull banked specimens to fulfill requests from the research base.
Traeannah Brown, Study Coordinator
Ms. Brown is currently a study coordinator in the Division of Rheumatology & Immunology with extensive experience in lupus databases and lupus investigator-initiated clinical studies. She covers a half day in the Rutledge Tower clinic on Wednesdays for visits with patients that have SLE and SSc.
Terri Hayes, Administrative Coordinator
Ms. Hayes has excellent organizational skills and will be responsible for facilitating communication between all CCCR (FORMERLY MCRC) investigators, Advisory Committee members, and invited speakers. She will perform all center-related word processing, record minutes at meetings, distribute memos and correspondence, coordinate travel arrangements, process reimbursement requests, and maintain the Director's calendar and CCCR (FORMERLY MCRC) correspondence files.