Feasibility and preliminary data for a State-wide South Carolina Lupus Registry

Brittany L. Smalls; Trevor D. Faith; Hetlena Johnson; Edith M. Williams

doi:10.1177/09612033211014591

Feasibility and preliminary data for a State-wide South Carolina Lupus Registry

Brittany L. Smalls, Trevor D. Faith, Hetlena Johnson, Edith M. Williams

Family and Community Medicine

Research output: Contribution to journal › Article › peer-review

Abstract

Background: Systemic lupus erythematosus (SLE) or lupus is an autoimmune disorder whose cause and reason for disproportionate impact on minorities remains enigmatic. Furthermore, statistics describing lupus incidence and prevalence are outdated and often based on small samples. To begin to address this disparity this report describes preliminary data to be utilized in the development of a state-wide lupus registry in South Carolina. Methods: A prospective survey and retrospective data from the South Carolina Budget and Control Board Office of Research & Statistics were used to capture data pertaining to knowledge of lupus, prevalence, and access to lupus care. Results: Retrospective ORS data indicated there were 11,690 individuals living with lupus in 2014 with the average direct cost of $69,999.40 in medical care. Prospective surveys (N = 325), in over 16 locations in South Carolina, showed 31% knew someone with lupus, 16% had been diagnosed with lupus, and 50% did not know of a medical facility that treated lupus. Conclusion: A lupus registry and repository will provide ongoing access for researchers on the impact of lupus on communities in South Carolina. Lupus is highly prevalent, but disproportionately represented in terms of patient information and participation in clinical trials, so it is also expected that this preliminary work will provide an ongoing process in which the medical community can better engage lupus patients.

Original language	English
Pages (from-to)	1300-1305
Number of pages	6
Journal	Lupus
Volume	30
Issue number	8
DOIs	https://doi.org/10.1177/09612033211014591
State	Published - Jul 2021

Bibliographical note

Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was partially supported by an ASPIRE grant from the Office of the Vice President for Research at the University of South Carolina. The S.C. Budget and Control Board Office of Research & Statistics (ORS) provided data based on study application. The contents are solely the responsibility of the authors and do not necessarily represent the official views of the University, S.C. Budget and Control Office, or the South Carolina citizens who participated.

Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was partially supported by an ASPIRE grant from the Office of the Vice President for Research at the University of South Carolina. The S.C. Budget and Control Board Office of Research & Statistics (ORS) provided data based on study application. The contents are solely the responsibility of the authors and do not necessarily represent the official views of the University, S.C. Budget and Control Office, or the South Carolina citizens who participated.

Publisher Copyright:
© The Author(s) 2021.

Keywords

Registry
epidemiology/surveillance
systemic lupus erythematosus

ASJC Scopus subject areas

Rheumatology

Access to Document

10.1177/09612033211014591

Cite this

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title = "Feasibility and preliminary data for a State-wide South Carolina Lupus Registry",

abstract = "Background: Systemic lupus erythematosus (SLE) or lupus is an autoimmune disorder whose cause and reason for disproportionate impact on minorities remains enigmatic. Furthermore, statistics describing lupus incidence and prevalence are outdated and often based on small samples. To begin to address this disparity this report describes preliminary data to be utilized in the development of a state-wide lupus registry in South Carolina. Methods: A prospective survey and retrospective data from the South Carolina Budget and Control Board Office of Research & Statistics were used to capture data pertaining to knowledge of lupus, prevalence, and access to lupus care. Results: Retrospective ORS data indicated there were 11,690 individuals living with lupus in 2014 with the average direct cost of $69,999.40 in medical care. Prospective surveys (N = 325), in over 16 locations in South Carolina, showed 31% knew someone with lupus, 16% had been diagnosed with lupus, and 50% did not know of a medical facility that treated lupus. Conclusion: A lupus registry and repository will provide ongoing access for researchers on the impact of lupus on communities in South Carolina. Lupus is highly prevalent, but disproportionately represented in terms of patient information and participation in clinical trials, so it is also expected that this preliminary work will provide an ongoing process in which the medical community can better engage lupus patients.",

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note = "Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was partially supported by an ASPIRE grant from the Office of the Vice President for Research at the University of South Carolina. The S.C. Budget and Control Board Office of Research & Statistics (ORS) provided data based on study application. The contents are solely the responsibility of the authors and do not necessarily represent the official views of the University, S.C. Budget and Control Office, or the South Carolina citizens who participated. Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was partially supported by an ASPIRE grant from the Office of the Vice President for Research at the University of South Carolina. The S.C. Budget and Control Board Office of Research & Statistics (ORS) provided data based on study application. The contents are solely the responsibility of the authors and do not necessarily represent the official views of the University, S.C. Budget and Control Office, or the South Carolina citizens who participated. Publisher Copyright: {\textcopyright} The Author(s) 2021.",

year = "2021",

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AU - Faith, Trevor D.

AU - Johnson, Hetlena

AU - Williams, Edith M.

N1 - Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was partially supported by an ASPIRE grant from the Office of the Vice President for Research at the University of South Carolina. The S.C. Budget and Control Board Office of Research & Statistics (ORS) provided data based on study application. The contents are solely the responsibility of the authors and do not necessarily represent the official views of the University, S.C. Budget and Control Office, or the South Carolina citizens who participated. Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was partially supported by an ASPIRE grant from the Office of the Vice President for Research at the University of South Carolina. The S.C. Budget and Control Board Office of Research & Statistics (ORS) provided data based on study application. The contents are solely the responsibility of the authors and do not necessarily represent the official views of the University, S.C. Budget and Control Office, or the South Carolina citizens who participated. Publisher Copyright: © The Author(s) 2021.

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N2 - Background: Systemic lupus erythematosus (SLE) or lupus is an autoimmune disorder whose cause and reason for disproportionate impact on minorities remains enigmatic. Furthermore, statistics describing lupus incidence and prevalence are outdated and often based on small samples. To begin to address this disparity this report describes preliminary data to be utilized in the development of a state-wide lupus registry in South Carolina. Methods: A prospective survey and retrospective data from the South Carolina Budget and Control Board Office of Research & Statistics were used to capture data pertaining to knowledge of lupus, prevalence, and access to lupus care. Results: Retrospective ORS data indicated there were 11,690 individuals living with lupus in 2014 with the average direct cost of $69,999.40 in medical care. Prospective surveys (N = 325), in over 16 locations in South Carolina, showed 31% knew someone with lupus, 16% had been diagnosed with lupus, and 50% did not know of a medical facility that treated lupus. Conclusion: A lupus registry and repository will provide ongoing access for researchers on the impact of lupus on communities in South Carolina. Lupus is highly prevalent, but disproportionately represented in terms of patient information and participation in clinical trials, so it is also expected that this preliminary work will provide an ongoing process in which the medical community can better engage lupus patients.

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Feasibility and preliminary data for a State-wide South Carolina Lupus Registry

Abstract

Bibliographical note

Keywords

ASJC Scopus subject areas

Access to Document

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