Alzheimer’s Disease Working Group

Research Expert Team

February 18, 2010

In attendance:Mary Birchard (co-chair); Anne Murray, MD (co-chair); Joe Gaugler, PhD (via phone);Leah Hanson, PhD; Laura Hemmy, PhD; Barbara Keigan (via phone); LaRae Knatterud; Siobhan McMahon, GNP (via phone); Patricio Reyes, MD; John Selstad; Carol Shapiro;Peter Spuit; Kate Tripoli; Kathleen Zahs, PhD

  1. Welcome, Introductions, Meeting Goals

Mary and Anne led introductions and welcomed report writer LaRae Knatterud and Peter Spuit from the MN Department of Human Services. The purpose of this meeting is to reestablish the team charge and to prepare for making recommendations at the May 4 Working Group meeting.

  1. Review ADWG Actions from January Meeting
  2. Review Research Team’s Priority Needs

At the January Working Group meeting, the teams discussed their priority needs. Teams must evaluate the current state of their priority issues, costs and other considerations before making their recommendations. The priorities of the Research team are:

  1. Existence of and access to a clearinghouse of information regarding studies, institutions and investigators conducting studies, resource lists and online resources
  2. Resource funding options
  3. Analysis regarding adequacy of current surveillance system
  4. Assurance of sustainability of research projects

The Mayo Clinic’s Olmstead County survey on the prevalence of MCI is the gold standard for surveillance, but it is missing urban and significant ethnic populations.

  1. Discuss Update in BRFSS Recommendations

Peter Spuit reported on the CDC’s Behaviorial Risk Factor Surveillance System, which is a randomized telephone survey conducted in Minnesota every year. The survey consists of required or “core” modules and optional modules, which states can use at their discretion. Questions about memory loss and cognition are included in an optional module, which Minnesota has yet to include. There is also an optional module on caregiving, which Minnesota included in 2008. The National Alzheimer’s Association has selected Minnesota as one of several states to receive funding to be able to include the cognitive impairment module. The average cost for an optional module in one year is about $25,000. The team discussed the value in using BRFSS as a tool for collecting data for researchers, the adequacy of the questions in the cognitive impairment module, and the importance of using correlating data from the BRFSS on behaviors related to falls, sleeping, diet, etc. when measuring the prevalence of Alzheimer’s. While states cannot change the questions that are asked, they can add questions to the modules. The team will review and critique the cognitive impairment module and suggest potential additional questions.

  1. Review Sub-Group Work on Research Clearinghouse

Dr. Leah Hanson reported on the development of the Minnesota Memory Project, a dementia registry being created at HealthPartners. The registry consists of three audiences: those without diagnosed memory impairment, those with diagnosed memory impairment, and caregivers. They receive a 30-minute cognitive battery every year; later data may include other biological and environmental factors. HealthPartners is currently promoting the registry internally, at a number of Twin Cities facilities and at the Alzheimer’s Association Dementia Conference. The website, mnmemoryproject.org, will launch on March 20. The annual cost per person will not be known until results are measured. HealthPartners is hoping to recruit 1,000 participants in the first three years and intends to open the registry to participants across the state, giving access to a variety of organizations.

  1. Update on Research Registry in St. Louis

Mary Birchard reviewed a presentation on the Alzheimer’s Association St. Louis Chapter Researchers Forum. The St. Louis Chapter and Washington University developed a registry to recruit for a variety of trials and studies. They currently have about 40 participants who opt in due to an interest in research. Many patients only participate in registries or studies by recommendation from their primary care physician or provider.

The team discussed the possibility of using the HealthPartners registry as a foundation for a statewide clearinghouse, as well as how to integrate social networking media to create a community around the information.

  1. Determine Research Needed for Sustainability Need
  1. Call for Two Team Members to Sit on Cost Sub-Group

A group is forming to look at cost questions affecting all expert teams and Working Group priority issues. This group will consist of representatives from all five teams and financial experts. If anyone is interested and available to serve on this group, please let Mary Birchard know.

  1. Research Expert Team Questions for Diversity Survey

A Snap Survey is being developed to learn the needs of multicultural populations across the state as they relate to the work of the expert teams. This is an online-only survey and is not scientific; proposed questions regarding research and potential barriers to participation may be sent to Mary Birchard.

  1. Action Steps for Next Meeting
  • Developing recommendations around a research clearinghouse is the top priority. Leah Hanson will bring more information from her co-investigators regarding the registry and their goals.
  • Team members will review and critique the BRFSS Cognitive Impairment module, which can be downloaded from the wiki (alzworkinggroup.pbworks.com) and suggest three additional questions to add to the module.
  • Angela Lunde from the Mayo Clinic will be invited to the next meeting and bring information regarding the Olmstead County study.
  • John Selstad will look into using the School of Public Health phone study as an alternative to the BRFSS.
  • Kathy Zahs will investigate the development of questions for the diversity survey.
  • The next meeting will be rescheduled from its original date of March 22 in order to allow participation by key team members. The next meeting will be shortened to two hours.

Respectfully submitted,

Kate Tripoli