Dear Huntington disease (HD) community,
I have a disappointing update on two HD treatments that were being studied in the PRECISION-HD1 and PRECISION-HD2 trials. After reviewing the data, Wave has announced that both trials have been discontinued. The studies were stopped as the drugs being assessed did not achieve what was hoped. Ultimately, the goal of reducing mutant huntington protein in spinal fluid was not observed.
Wave has confirmed that their SNP-3 trial will continue as planned. They are hopeful that the SNP-3 trial will provide better outcomes than the two previous studies. The design of the molecule is significantly different than the previous studies and we hope that this will have better results. Eligibility criteria for this study will be posted on the clinical trials page of the HSC website. If you are interested in participating in the SNP-3 trial, please reach out to your HD clinician. It is encouraging that Wave is continuing HD clinical research.
Although this is not the news we were hoping to hear, I want to reiterate our heartfelt thanks to all of our Huntington Heroes who participate in clinical trials to make possible the learning and discovery process.
We encourage you to read through the information provided by Wave Life Sciences.
Click here for the Wave Community Statement:
Click here for the Wave press release:
Whether you are a person living at risk, mutation positive, symptomatic of HD, or a carer, strong emotions can surface with an announcement such as the one concerning this study. Please know there are people and places you can turn to get more information and support:
Should you or a family member be in crisis, you can contact:
- Suicide Hotline (Crisis Services Canada): www.crisisservicescanada.ca, call 1.833.456.4566 or Text 45645 (nationally)
- Youth: Kids Help Phone: https://kidshelpphone.ca/ call 1.800.668.6868 or Text 686868
- Everyone: Your local crisis service, or hospital emergency department. If there is imminent danger, you can also call 911.
HSC Family Services (FS) are available to provide support, education on HD, resources and referrals. Individuals and families can find the contact information for the nearest FS team member here: https://www.huntingtonsociety.ca/family-services-team-list/
At our Virtual National Conference this past weekend I was struck once again by the power of hope and resilience displayed by the Huntington community. Despite the setback of these two failed clinical programs (Roche and Wave), there are many other clinical research programs that offer hope to our community.
Huntington Society of Canada