AAAI Publications, 2013 AAAI Spring Symposium Series

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Online Population-Based Patient Registry to Collect and Share Health-related Data of Rare Disease Patients
Mizuki Morita, Soichi Ogishima, Kunihiro Nishimura, Eiji Aramaki, Tateo Ito

Last modified: 2013-03-15

Abstract


Rare diseases, those affecting few patients, are in fact neglected diseases that demand special concern and care. We are constructing an online system to collect health-related data and complaints from rare-disease patients to share that information with stakeholders, thereby facilitating the development of new or improved drugs, treatments, and policies and enhancing the quality of life (QOL) for patients with such diseases. The system will also track and monitor the physical states and conditions of patients, which will facilitate the management of their QOL and improve communication with health professionals.

Keywords


patient registry; personal health record; self-tracking; self-monitoring; rare disease

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