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The International LAM Registry: A Component of an Innovative Web-Based Clinician, Researcher, and Patient-Driven Rare Disease Research Platform LYMPHATIC RESEARCH AND BIOLOGY Nurok, M., Eslick, I., Carvalho, C. R., Costabel, U., D'Armiento, J., Glanville, A. R., Harari, S., Henske, E. P., Inoue, Y., Johnson, S. R., Lacronique, J., Lazor, R., Moss, J., Ruoss, S. J., Ryu, J. H., Seyama, K., Watz, H., Xu, K., Hohmann, E. L., Moss, F. 2010; 8 (1): 81-87

Abstract

A relative inability to capture a sufficiently large patient population in any one geographic location has traditionally limited research into rare diseases.Clinicians interested in the rare disease lymphangioleiomyomatosis (LAM) have worked with the LAM Treatment Alliance, the MIT Media Lab, and Clozure Associates to cooperate in the design of a state-of-the-art data coordination platform that can be used for clinical trials and other research focused on the global LAM patient population. This platform is a component of a set of web-based resources, including a patient self-report data portal, aimed at accelerating research in rare diseases in a rigorous fashion.Collaboration between clinicians, researchers, advocacy groups, and patients can create essential community resource infrastructure to accelerate rare disease research. The International LAM Registry is an example of such an effort. 82.

View details for DOI 10.1089/lrb.2009.0028

View details for Web of Science ID 000277870500011

View details for PubMedID 20235890