The first meeting of the Huntington’s Disease Coalition for Patient Engagement (HD-COPE) took place in London this week. HD-COPE unites organizations serving HD families in Europe, Canada, and the USA to help give patients a direct voice in clinical research by facilitating communication between the HD community and pharmaceutical companies working on drugs for HD. Family input is especially important as potential huntingtin-lowering treatments enter clinical trials. To learn more about HD-COPE, read HDSA’s September press release.
Interpreting This Week’s News
Recent press suggests that consuming sugary, caffeinated sodas could lead to an earlier onset of HD. But don’t get too alarmed about your pop consumption – even the researchers who performed the study are cautious about making this interpretation. They looked at many lifestyle factors (like smoking, alcohol, soda, and morning coffee) in around 250 at-risk individuals over a period of about 4 years. For the 36 people who developed HD symptoms during the study, statistics suggest that caffeinated soda might have been a potential culprit – but not coffee or tea. The researchers conclude that development of symptoms “was generally not affected by the lifestyle factors that we investigated,” and that further study is necessary before recommending dietary changes to people at risk.
Another recent news article and an audio segment on NPR’s Science Friday suggest that we need to re-evaluate huntingtin lowering because of new insights about how the protein affects the developing fetus. However, the media’s interpretation of the research has been puzzling. A team at Rockefeller University in New York created some new tools to study the role of huntingtin protein in an embryo growing in a dish. They found that huntingtin could be doing harm in brain cells much earlier than we think, but the news confused their novel techniques with a clinical approach. Check out this detailed explanation of their findings from HDBuzz.