The International LAM Registry: a component of an innovative web-based clinician, researcher, and patient-driven rare disease research platform.
Lymphat Res Biol
; 8(1): 81-7, 2010 Mar.
Article
em En
| MEDLINE
| ID: mdl-20235890
ABSTRACT
BACKGROUND:
A relative inability to capture a sufficiently large patient population in any one geographic location has traditionally limited research into rare diseases. METHODS ANDRESULTS:
Clinicians interested in the rare disease lymphangioleiomyomatosis (LAM) have worked with the LAM Treatment Alliance, the MIT Media Lab, and Clozure Associates to cooperate in the design of a state-of-the-art data coordination platform that can be used for clinical trials and other research focused on the global LAM patient population. This platform is a component of a set of web-based resources, including a patient self-report data portal, aimed at accelerating research in rare diseases in a rigorous fashion.CONCLUSIONS:
Collaboration between clinicians, researchers, advocacy groups, and patients can create essential community resource infrastructure to accelerate rare disease research. The International LAM Registry is an example of such an effort. 82.
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Sistema de Registros
/
Linfangioleiomiomatose
/
Doenças Raras
Tipo de estudo:
Diagnostic_studies
Limite:
Humans
Idioma:
En
Ano de publicação:
2010
Tipo de documento:
Article