Summary
- Clinical Trials Corner: End of Year Update from Dr. Ed Wild
- What is the economic burden of HD? Researchers look to find out
- Taking Action in 2023
Clinical Trials Corner: End of Year Update from Dr. Ed Wild
Last month, the Journal of Huntington’s Disease published an end of year research wrap-up from Dr. Ed Wild. The update chronicled major changes in the HD research pipeline over the latter half of the year and gave special attention to PIVOT-HD, the ongoing study of PTC-518 from PTC Therapeutics, and SIGNAL, the recently completed study of pepinemab by Vaccinex. To read the full article on these trials and many more, click here.
What is the economic burden of HD? Researchers look to find out
The challenges of HD are well understood by families affected by the disease. Recently, researchers set out to better understand the financial implications of an HD diagnosis. A study published in the European Journal of Neurology surveyed the economic burden of Huntington’s disease across five European countries and the United States. The results determined that HD does place a significant financial burden on the individuals and families it affects, and that this burden increases in later stages of the disease. To read the full article, click here.
Taking Action in 2023
As we ring in the new year, we want to acknowledge the readers of this blog; taking the time to stay informed about activity in the HD research space is an act of advocacy. If you’re interested in upping your impact in 2023, consider a couple of ways that you can participate in research and advocacy from home this year, no matter how you are affected by HD.
- As 2022 drew to a close, lawmakers finalized the FY23 Omnibus Package, which did not include the HD Parity Act (S. 868, H.R. 2050). This means that those who qualify for federal disability because of the serious progression of their HD will continue to have to wait two years to access Medicare and Social Security Disability Insurance benefits. To read more about this news, click here. To take action and get involved in the fight to pass this critical legislation for HD families, click here.
- The results of survey studies of HD family members can be used to shape policies and practices around research and care. To add your voice and help HD researchers around the globe, check out HDSA’s surveys page.
