Lupus Registries: Evolution and Challenges

Lu, Liang-Jing; Wallace, Daniel J.; Navarra, Sandra V.; Weisman, Michael H.

doi:10.1016/j.semarthrit.2008.08.009

« Previous Next »Seminars in Arthritis and Rheumatism
Volume 39, Issue 4 , Pages 224-245, February 2010

Lupus Registries: Evolution and Challenges

Liang-Jing Lu, MD, PhD
- Visiting Scholar of Division of Rheumatology, Cedars-Sinai Medical Center, Los Angeles, CA; and Associate Professor, Department of Rheumatology, Ren Ji Hospital, Shanghai Jiaotong University School of Medicine, Shanghai, China
Daniel J. Wallace, MD
- Clinical Professor of Medicine, Cedars-Sinai Medical Center, David Geffen School of Medicine at UCLA, Los Angeles, CA
Sandra V. Navarra, MD
- Professor, Section of Rheumatology, Clinical Immunology and Osteoporosis, University of Santo Tomas, Manila, Philippines
Michael H. Weisman, MD
- Director, Division of Rheumatology, Cedars-Sinai Medical Center, Professor of Medicine, David Geffen School of Medicine at UCLA, Los Angeles, CA
- Address reprint requests to Michael H. Weisman, MD, Cedars Sinai Medical Center, 8700 Beverly Boulevard, Suite B131, Los Angeles, CA 90048

published online 11 November 2008.

Objectives

To review the current status of lupus registries, highlight the importance and evolution of registries in clinical lupus research, discuss substantial advances in the understanding of lupus through the use of registries, and discuss the future role of registries in terms of opportunities and challenges.

Methods

The literature reviewed originated from the PubMed database and was limited to adult disease in articles published before June 01, 2008. Keywords used in the PubMed search included the following terms: systemic lupus erythematosus, registry, cohort, and database. All articles were sorted and analyzed according to a template devised by the authors describing the different types of registries.

Results

The most important features of a lupus registry are that they contain a large number of subjects and reflect a relatively real world environment for lupus patients. Data obtained from the lupus registries are essential for planning, designing, and conducting clinical lupus studies, especially those difficult, inappropriate, or even unethical to study in randomized controlled trials. Up to now, some well-conducted registries have received recognition for their contributions to lupus research through their focus on different goals: epidemiology, genetics, ethnic diversity, clinical features, or outcomes. Although they have evolved in design and study emphasis steadily, there are still many issues left to resolve. Apart from the development and future direction of the lupus registry, attention needs to be applied to normalizing the ethical and legal rules involving a lupus registry.

Conclusions

Lupus registries have demonstrated high standards and achieved much success through decades of effort, but they are still in an active state of evolution as they address more questions with greater clarity and sophistication.

Keywords: systemic lupus erythematosus, registry, cohort, database

Abbreviations: ACR, American College of Rheumatology, LUMINA, LUpus in MInorities: NAture vs. nurture, RCTs, Randomized controlled trials, SLE, Systemic lupus erythematosus, SLICC, Systemic Lupus Erythematosus International Collaborating Clinics