User Centered Rare Disease Clinical Trial Knowledge Graph (RCTKG).
Stud Health Technol Inform
; 310: 94-98, 2024 Jan 25.
Article
em En
| MEDLINE
| ID: mdl-38269772
ABSTRACT
Drug development in rare diseases is challenging due to the limited availability of subjects with the diseases and recruiting from a small patient population. The high cost and low success rate of clinical trials motivate deliberate analysis of existing clinical trials to understand status of clinical development of orphan drugs and discover new insight for new trial. In this project, we aim to develop a user centered Rare disease based Clinical Trial Knowledge Graph (RCTKG) to integrate publicly available clinical trial data with rare diseases from the Genetic and Rare Disease (GARD) program in a semantic and standardized form for public use. To better serve and represent the interests of rare disease users, user stories were defined for three types of users, patients, healthcare providers and informaticians, to guide the RCTKG design in supporting the GARD program at NCATS/NIH and the broad clinical/research community in rare diseases.
Palavras-chave
Texto completo:
1
Base de dados:
MEDLINE
Assunto principal:
Reconhecimento Automatizado de Padrão
/
Doenças Raras
Limite:
Humans
Idioma:
En
Revista:
Stud Health Technol Inform
Assunto da revista:
INFORMATICA MEDICA
/
PESQUISA EM SERVICOS DE SAUDE
Ano de publicação:
2024
Tipo de documento:
Article
País de afiliação:
Estados Unidos