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URL: http://rarediseasesnetwork.epi.usf.edu/STAIR/professional/register/index.htm
Proper Citation: RDCRN Patient Contact Registry (RRID:SCR_004369)
Description: A portal specifically for patients (and their families) with sterol and other related disorders where they can register themselves with STAIR in order to be contacted in the future about clinical research opportunities and updated on the progress of the STAIR research projects. An online Registry form exists for all the BVMC disorders currently being studied.
Synonyms: STAIR Contact Registry, Rare Diseases Clinical Research Network Patient Contact Registry
Resource Type: patient registry, people resource
Keywords: sterol, patient registry, rare disease, cerebrotendinous xanthomatosis, mevalonic aciduria, hyperimmunoglobulinemia d with periodic fever syndrome, niemann-pick disease type c, sitosterolemia, sjogren-larsson syndrome, smith-lemli-opitz syndrome
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Source: SciCrunch Registry
The NIDDK Information Network (dkNET) serves the needs of basic and clinical investigators by providing seamless access to large pools of data and research resources relevant to the mission of The National Institute of Diabetes Digestive and Kidney Diseases (NIDDK). dkNET is hosted at University of California San Diego, and is supported by NIH NIDDK grant 2U24DK097771-09.
Email: info_at_ dknet.org
