Clinical & Community Resource Core

The Clinical and Community Resource Core (CCR Core) builds on the success of the currently funded Core Center for Clinical Research (CCCR) in the Division of Rheumatology & Immunology at MUSC . Since 2012, the CCCR 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

Director:

Jim Oates, M.D.,  Professor and Division Director, Division Rheumatology and Immunology; Vice Chair for Research, Department of Medicine

As Director of the Clinical and Community Resource Core (CCR Core), Dr. Oates supervises all aspects of the CCR Core and serves as a consultant on Aim 4. His oversight includes 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).

Associate Director:

Diane Kamen, M.D., 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 serves 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 is 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. 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 collaborates with Dr. Oates as the BMIC lead to complete the informatics requirements of this project. 

Jonathan Flume, Lead Study Coordinator

Mr. Flume ensures 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 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. He works with the Methodologic Core and the Informatics staff to ensure that all clinical data collected are accurately recorded and filed securely. He adjudicates data from the Data Transfer System into REDCap. He also creates feasibility reports for investigators.

Katie Kirchoff, Systems Architect and Programmer/Analyst

Ms. Kirchoff plays a critical role in implementing the Informatics vision proposed for the CCRC. As a member of the BioMedical Informatics Center (BMIC) of SCTR, she benefits from the extensive informatics team experience in this SCTR Core. She works 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 helps in the design and implementation of the research participant recruitment and just-in-time sample acquisition design. She provides 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 sample technician. She maintains the existing and incoming inventory of samples for the CCR Core biorepository, updates sample locations in TissueMetrix, ensures that freezers have preventive maintenance and adequate CO2 backup and functioning alarms, and pulls banked specimens to fulfill requests from the research base.