TY - GEN
T1 - Online population-based patient registry to collect and share health-related data of rare disease patients
AU - Morita, Mizuki
AU - Ogishima, Soichi
AU - Nishimura, Kunihiro
AU - Aramaki, Eiji
AU - Ito, Tateo
PY - 2013/9/9
Y1 - 2013/9/9
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=84883430131&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=84883430131&partnerID=8YFLogxK
M3 - Conference contribution
AN - SCOPUS:84883430131
SN - 9781577356004
T3 - AAAI Spring Symposium - Technical Report
SP - 65
EP - 66
BT - Data Driven Wellness
T2 - 2013 AAAI Spring Symposium
Y2 - 25 March 2013 through 27 March 2013
ER -
