Tell the NIH You Want Prion Disease to Be a Research Priority!

Until December 20, 2019, your comments on the importance of prion disease research can help form the research priorities of the NIH for the next three years!

Every three years, the NIH hosts a summit to confirm research priorities for Alzheimer’s Disease and “Related Dementias.”  Lewy Body Dementia, Frontotemporal Degeneration, and other dementias are listed, but to date, Prion Disease has not been listed as a research priority.

To prepare for the March 2019 summit, the NIH is collecting comments by December 20, 2018, from “scientists, clinicians, patients, families, caregivers, advocates, and the broader dementia community on the most important needs and promising opportunities for Alzheimer's disease-related dementias (ADRD) research.”

“Recommendations developed through these summits become part of the National Plan as prioritized research milestones to guide future NIH investments in AD/ADRD research.”  Your voice matters!

The CJD Foundation can provide you with a template at  Responses to this RFI must be submitted via email by December 20, 2018 to with "ADRD Summit RFI" in the subject line.  

The NIH is requesting:

  • “Comments and suggestions regarding the current ADRD research milestones -- examples include comments about how these current milestones could be revised, the most promising areas of research that the research community should focus efforts on based on knowledge gap or research needs, any new research questions that draft recommendations should address based on scientific progress we've made since ADRD 2016, particular areas of ADRD research that the field has made most progress on, etc.”
  • “Any research activities your organization has supported that are in alignment with the ADRD research milestones, or information on the progress your organization has made towards the milestones”

Important links:


Current ADRD Research Priorities:

To obtain a template for your comments, write to Help@CJDFoundation.comSubmission deadline is December 20, 2018!