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 |
| Publication status | Published - Sep 9 2013 |
| Externally published | Yes |
| Event | 2013 AAAI Spring Symposium - Palo Alto, CA, United States Duration: Mar 25 2013 → Mar 27 2013 |
Publication series
| Name | AAAI Spring Symposium - Technical Report |
|---|---|
| Volume | SS-13-03 |
Other
| Other | 2013 AAAI Spring Symposium |
|---|---|
| Country | United States |
| City | Palo Alto, CA |
| Period | 3/25/13 → 3/27/13 |
ASJC Scopus subject areas
- Artificial Intelligence
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Cite this
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 (pp. 65-66). (AAAI Spring Symposium - Technical Report; Vol. SS-13-03).