Research is part of Adira's efforts to learn in its listen, learn, act model.

We learn from a wide set of experts directly and indirectly impacting neurodegenerative disease care. We also learn from partner and grantee projects and reports.

Building new collaborative approaches: Best practices and lessons learned from three successful models

Researchers at George Washington University in Washington, D.C., conducted a case study of three programs that have shown success in the transformation of care and services for people living with HIV to inform Adira’s efforts in advancing its mission of investing in better lives for people with neurodegenerative diseases:

  1. The Ryan White HIV/AIDS Program.
  2. The Global Fund to Fight AIDS, Tuberculosis and Malaria.
  3. The President’s Emergency Plan for AIDS Response.

Measuring quality of life in neurodegenerative disease

Adira Programs Manager Lauren Ruiz and Zainab Mahmood, a master’s of public health candidate at The Milken Institute School of Public Health, authored a report examining the metrics defined in assessment tools used to evaluate quality of life.

Currently, there are hundreds of instruments used around the world to measure quality of life (QOL). They vary in perspective, simplicity, utility and adoption. Through this analysis they sought to better understand the existing landscape of QOL assessment tools. The report also aligns the current metrics identified with a suggested set of five common metrics to evaluate QOL—time, money, energy, confidence and connection. Based on this alignment, the report provides recommendations for establishing a standard, shared approach to evaluate total system impact on QOL in neurodegenerative disease groups.

Multilateral funding to transform care in neurodegenerative disease

This Adira-authored white paper is intended to spark thinking among people working at established multilateral organizations regarding how a multilateral funding effort could be piloted among five neurodegenerative disease communities.

It is a request for assistance in fully developing an appealing, viable model that will bring forth supplementary, more integrated efforts to positively impact both individuals and systems.

Community engagement and convening

We convene as part of every program, but we are working additionally to hear from people of color and others who experience health disparities. Through focus groups and one-on-one interviews we want to paint a better picture of what inequities exist specifically among Alzheimer’s, ALS, Huntington’s, MS and Parkinson’s.

Of course, what it means to convene is changing rapidly and Adira is finding new ways to safely bring together representatives from all five communities to share best practices, hear about innovative services, and create connections.

Hear what we learned at our first major convening here.