HDBuzz: empowering patients through accessible education

Edward J Wild; Jeffrey B Carroll

doi:10.1016/j.molmed.2011.09.003

HDBuzz: empowering patients through accessible education

Trends Mol Med. 2012 Jan;18(1):1-3. doi: 10.1016/j.molmed.2011.09.003. Epub 2011 Oct 21.

Authors

Edward J Wild¹, Jeffrey B Carroll

Affiliation

¹ Department of Neurodegenerative Disease, UCL Institute of Neurology, National Hospital for Neurology and Neurosurgery, London, WC1N 3BG, UK.

PMID: 22018672
DOI: 10.1016/j.molmed.2011.09.003

Abstract

Research and patient communities are firmly interdependent. Engaged patient communities provide biological samples and data that drive discoveries which, in turn, fuel the development of novel therapies. Historically, Huntington's disease (HD) has benefited from trusting interactions between scientists and patients. However, even for HD, communication between the research and patient communities is suboptimal. The web platform HDBuzz was created to rectify this situation by providing accurate, accessible information on the latest HD research to patients and their supporters.

MeSH terms

Humans
Huntington Disease*
Patient Education as Topic / methods*
Patient Education as Topic / statistics & numerical data*
Research / education
Social Media*