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

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

Tohoku Medical Megabank Organization (ToMMo)

Research output: Chapter in Book/Report/Conference proceeding › Conference 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 language	English
Title of host publication	Data Driven Wellness
Subtitle of host publication	From Self-Tracking to Behavior Change - Papers from the AAAI Spring Symposium, Technical Report
Pages	65-66
Number of pages	2
Volume	SS-13-03
Publication status	Published - 2013 Sep 9
Event	2013 AAAI Spring Symposium - Palo Alto, CA, United States Duration: 2013 Mar 25 → 2013 Mar 27

Other

Other	2013 AAAI Spring Symposium
Country/Territory	United States
City	Palo Alto, CA
Period	13/3/25 → 13/3/27

ASJC Scopus subject areas

Artificial Intelligence

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Cite this

Online population-based patient registry to collect and share health-related data of rare disease patients. / Morita, Mizuki; Ogishima, Soichi; Nishimura, Kunihiro et al.

Data Driven Wellness: From Self-Tracking to Behavior Change - Papers from the AAAI Spring Symposium, Technical Report. Vol. SS-13-03 2013. p. 65-66.

Research output: Chapter in Book/Report/Conference proceeding › Conference contribution

Morita, M, Ogishima, S, Nishimura, K, Aramaki, E & Ito, T 2013, Online population-based patient registry to collect and share health-related data of rare disease patients. in Data Driven Wellness: From Self-Tracking to Behavior Change - Papers from the AAAI Spring Symposium, Technical Report. vol. SS-13-03, pp. 65-66, 2013 AAAI Spring Symposium, Palo Alto, CA, United States, 13/3/25.

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Online population-based patient registry to collect and share health-related data of rare disease patients

Abstract

Other

ASJC Scopus subject areas

UN SDGs

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