Clinical and genetic registries in psoriatic disease
Gladman, D.D.; Rahman, P.; Krueger, G.G.; Mease, P.J.; Qureshi, A.A.; Dutz, J.P.; Lindqvist, U.; Carneiro, S.; Helliwell, P.S.; Ujfalussy, I.; Gottlieb, A.B.; Behrens, F.; Ståhle, M.
Journal of Rheumatology 35(7): 1458-1463
2008
ISSN/ISBN: 0315-162X PMID: 18609745 Document Number: 619232
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.