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

Research output: Chapter in Book/Report/Conference proceedingConference contribution

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.

Original languageEnglish
Title of host publicationData Driven Wellness
Subtitle of host publicationFrom Self-Tracking to Behavior Change - Papers from the AAAI Spring Symposium, Technical Report
Pages65-66
Number of pages2
VolumeSS-13-03
Publication statusPublished - 2013 Sep 9
Event2013 AAAI Spring Symposium - Palo Alto, CA, United States
Duration: 2013 Mar 252013 Mar 27

Other

Other2013 AAAI Spring Symposium
CountryUnited States
CityPalo Alto, CA
Period13/3/2513/3/27

ASJC Scopus subject areas

  • Artificial Intelligence

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