Summary
- Clinical trial Participation and Disability
- What’s POWER-HD? Dr. Arik Johnson and Katie Jackson share
- Online Survey: Insurance for people with HD
Clinical trial Participation and Disability
To file a disability claim, medical records are a must. But do clinical trial records count as medical records? Spoiler alert—the answer is no. While clinical trial participation does not disqualify you from being able to file a disability claim, your clinical trial records cannot be used in place of medical records. Learn more about why in the latest blog from HDSA’s resident disability expert, Allison Bartlett, Esq, here.
What’s POWER-HD? Dr. Arik Johnson and Katie Jackson share
By generating the most comprehensive patient-driven Huntington’s disease data, we can accelerate research and the development of new drugs, devices, or other therapies for HD. In a recent webinar, Arik Johnson, HDSA’s Interim CEO/Chief Mission Officer and Katie Jackson, Help4HD’s President/CEO explained the Who, What, Where, When and How of POWERHD. To learn more about this endeavor, listen to their conversation here.
Online Survey: Insurance for people with HD
Whether you are diagnosed with or at-risk for Huntington’s Disease, the decision to pursue life, long-term care, or disability insurance is a difficult one. Researchers for the UT Health Houston are looking to better understand the experiences of those pursuing these specified insurances, including motivating factors and barriers faced in obtaining these insurances.
This is survey is open to any English-speaking individuals, 18 years or older, who are diagnosed with or at-risk for HD, and who are currently residing in the U.S. If you are interested in participating, check out the flyer here, or click here to access the anonymous survey. If you have any questions or concerns, please contact karli.livingston@uth.tmc.edu.
