Article
The lupus family registry and repository.
Rheumatology (Oxford, England) - 1 Jan 2011
Rasmussen Astrid, Sevier Sydney, Kelly Jennifer A, Glenn Stuart B, Aberle Teresa, Cooney Carisa M, Grether Anya, James Ellen, Ning Jared, Tesiram Joanne, Morrisey Jean, Powe Tiny, Drexel Mark, Daniel Wes, Namjou Bahram, Ojwang Joshua O, Nguyen Kim L, Cavett Joshua W, Te Jeannie L, James Judith A, Scofield R Hal, Moser Kathy, Gilkeson Gary S, Kamen Diane L, Carson Craig W, Quintero-del-Rio Ana I, del Carmen Ballesteros Maria, Punaro Marilynn G, Karp David R, Wallace Daniel J, Weisman Michael, Merrill Joan T, Rivera Roberto, Petri Michelle A, Albert Daniel A, Espinoza Luis R, Utset Tammy O, Shaver Timothy S, Arthur Eugene, Anaya Juan-Manuel, Bruner Gail R, Harley John B
Abstract excerpt
The Lupus Family Registry and Repository (LFRR) was established with the goal of assembling and distributing materials and data from families with one or more living members diagnosed with SLE, in order to address SLE genetics. In the present article, we describe the problems and solutions of the registry design and biometric data gathering; the protocols implemented to guarantee data quality and protection of...
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