Does research into new Alzheimer's treatments reflect what matters most to those living with the disease and to their care partners? When new drugs become available, will they make the changes in people’s lives that are most important to them—or only help people do better on cognitive tests but not improve ability in areas of day-to-day living that are most important?

Surprisingly, patient and caregiver priorities have not been studied in a rigorous enough way that scientists and the FDA can apply that data to Alzheimer’s drug research and approval. UsAgainstAlzheimer’s and a group of partners are working to change that.

For this Alzheimer’s Talk, Brett Hauber, PhD, of RTI Health Solutions discussed the new What Matters Most Study. UsAgainstAlzheimer’s and its partners are launching this study to learn and to quantify what matters most to those living with Alzheimer’s and their care partners, so that their insights and preferences are considered as drugs are developed, approved, and brought into patients’ lives.

To hear the full discussion, click the Play button at left, under the photo.

Additional Resources

AD PACE (Alzheimer’s Disease Patient and Caregiver Engagement) Initiative: AD PACE is a collaboration of UsAgainstAlzheimer’s, pharmaceutical and bioscience companies, research institutions, patient organizations, and those living with Alzheimer’s and their care partners, along with advisors from NIH, FDA and CMS, all working to bring quantifiable data on patient and caregiver priorities to Alzheimer’s drug research and approval.

A-LIST: Join the A-LIST to share your thoughts and priorities on a range of topics around Alzheimer’s—whether you have cognitive impairment or Alzheimer’s, have ever cared for someone with Alzheimer’s, or are just worried about getting this disease. Scroll to page two here to see results of a recent A-LIST study on barriers to clinical trial participation.