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Clinical and Genetic Registries in Psoriatic Disease

DAFNA D. GLADMAN, PROTON RAHMAN, GERALD G. KRUEGER, PHILIP J. MEASE, ABRAR A. QURESHI, JAN P. DUTZ, ULLA LINDQVIST, SUELI CARNEIRO, PHILIP S. HELLIWELL, ILONA UJFALUSSY, ALICE B. GOTTLIEB, FRANK BEHRENS, and MONA STÅHLE

ABSTRACT.

Clinical and genetic registries are an important tool in studying psoriasis and psoriatic arthritis (PsA). They assist in delineating disease features and are crucial in defining phenotype and identifying genetic and other markers of disease expression. At the 2007 Annual Meeting of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA), members of the clinical registries and genetics committees described several ongoing registries, including their construction, protocols, and some results from their analyses. In breakout groups, members discussed data issues, including identification of core datasets, ownership, and how to share data; and ethical issues and possible sources of funding for registries. Proceedings of these meetings are summarized. (J Rheumatol 2008;35:1458-63)

Key Indexing Terms:

PSORIATIC ARTHRITIS
PSORIASIS
CLINICAL REGISTRIES
GENETIC STUDIES

From the University of Toronto, Toronto, Ontario; Department of Medicine, Division of Rheumatology, Memorial University, St. John's, Newfoundland; Department of Dermatology, University of Utah, Salt Lake City, Utah; Seattle Rheumatology Associates, Seattle, Washington; Harvard Medical School, Boston, Massachusetts, USA; Department of Dermatology and Skin Science, Children and Family Research Institute, University of British Columbia, Vancouver, Canada; Upsala University, Upsala, Sweden; Federal University of Rio de Janeiro, Brazil; Academic Unit of Musculoskeletal Medicine, University of Leeds, Leeds, United Kingdom; Policlinic of the Hospitaller Brothers of St. John of God, Budapest, Hungary; Department of Dermatology, Tufts-New England Medical Center and Tufts University School of Medicine, Boston, MA, USA; Rheumatology and Center for Drug Research, Development and Safety, J.W. Goethe-University, Frankfurt, Germany; and Dermatology and Venereology, Department of Medicine, Karolinska Institutet, Stockholm, Sweden.

Supported by an unrestricted financial grant from Abbott, Centocor, Wyeth, Amgen, and UCB Pharma.

D.D. Gladman, MD, FRCPC, University of Toronto; P. Rahman, MD, MSc, Department of Medicine, Division of Rheumatology, Memorial University; G.G. Krueger, MD, Department of Dermatology, University of Utah; P.J. Mease, MD, Seattle Rheumatology Associates; A.A. Qureshi, MD, MPH, Harvard Medical School; J.P. Dutz, MD, FRCPC, Department of Dermatology and Skin Science, Children and Family Research Institute, University of British Columbia; U. Lindqvist, MD, Upsala University; S. Carneiro, MD, PhD, Federal University of Rio de Janeiro; P.S. Helliwell, MD, PhD, Academic Unit of Musculoskeletal Medicine, University of Leeds; I. Ujfalussy, MD, Policlinic of the Hospitaller Brothers of St. John of God; A.B. Gottlieb, MD, PhD, Department of Dermatology, Tufts-New England Medical Center and Tufts University School of Medicine; F. Behrens, MD, Rheumatology and Center for Drug Research, Development and Safety, J.W. Goethe-University; M. Ståhle, MD, PhD, Dermatology and Venereology, Department of Medicine, Karolinska Institutet.

Address reprint requests to Dr. D.D. Gladman, Toronto Western Hospital, 399 Bathurst Street, 1E-410B, Toronto, Ontario M5T 2S8, Canada. E-mail: dafna.gladman@utoronto.ca