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Welcome to CAPRA Quarterly!

Welcome to the newsletter from the Center to Accelerate Population Research in Alzheimer’s (CAPRA) based at the University of Michigan. Here we’ll share CAPRA-developed research, resources, and opportunities for individuals interested in Alzheimer’s Disease and Alzheimer’s Disease Related Dementia (AD/ADRD).

CAPRA’s goal is to create an on-ramp for people entering population research using secondary-data that aims to reduce the burden of AD/ADRD. We are building this on-ramp with tools including annual pilot award funding for population-based AD/ADRD research, publicly available data resources and analytic tools that decrease time to functional accessibility of AD/ADRD healthcare and administrative data, and disseminating information like this newsletter, podcasts, and seminars that we think people interested in AD/ADRD research will find useful and informative.

I am joined in leading CAPRA with colleagues across the University of Michigan including Matthew Davis, Ken Langa, Deborah Levine, Donovan Maust, and Edward Norton. We share the same inclusive vision of engaging with people interested in joining the AD/ADRD research realm.

There is so much to be done in the space of Alzheimer’s and there’s so many challenges that we face. We need a groundswell of creative people solving the problems that this disease creates for the population. In that vein, we appreciate your interest in CAPRA and look forward to sharing more information with you as the work of CAPRA progresses.

Featured Pilot Award: Elham Mahmoudi, PhD

The CAPRA Pilot Core, led by University of Michigan faculty Edward Norton and Deborah Levine, aims to fund innovative pilot projects in AD/ADRD aligned with CAPRA’s themes of Alzheimer’s research at the population level. Featured in this newsletter is the research of CAPRA Pilot Awardee, Elham Mahmoudi, PhD.

Pilot Award Title

Developing and Validating a Natural Language Processing Algorithm for Caregiver Availability Among Patients with Alzheimer’s Disease and Related Dementia (ADRD)

Scientific Premise

Caregiver availability has been posited in prior literature to potentially prevent adverse events such as readmission in the ADRD population. Developing a novel algorithm around identifying caregiver availability could provide substantial added value for care managers and other clinicians. There is no algorithm that identifies a caregiver’s presence and type (or level) in structured or unstructured electronic medical records.

Study Aims

  • Quantify whether patient lives at home
  • Quantify whether patient lives at an institution
  • Quantify whether patient has a formal caregiver (paid)
  • Quantify whether patient has an informal caregiver (e.g., family member)

What drew you to the field of AD/ADRD research?

Although the prevalence of AD/ADRD is growing rapidly, there has been a void in providing efficient and value-added care for this patient population. I was drawn to this field to assess existing systems of care and evaluate the efficacy of alternative approaches. My hope is to improve care for people with AD/ADRD.

What is the most compelling research finding from your CAPRA Pilot proposal?

Informal caregivers play an important role in the health and well-being of individuals with AD/ADRD. People with an informal caregiver at home have fewer adverse health events such as unplanned 30-day hospital readmission. Using telephone encounter notes we were able to apply Natural Language Processing to reliably determine if the patient has an informal caregiver. Knowing whether the patient is alone versus having a family member or a friend to help if/when needed is a piece of critical knowledge to optimize care for people with AD/ADRD.

What is the most interesting open question to you about AD/ADRD research?

As a health economist, I am interested in the optimal allocation of limited healthcare resources. Due to their frailty and cognitive impairment, people with AD/ADRD rely heavily on caregiver support. One interesting research question is to determine not only the availability but the range, type, timing, and level of informal support available to patients with AD/ADRD. Answering these research questions can facilitate the delivery of appropriate and timely care.

Featured CAPRA Products & Resources

A guiding aim of CAPRA is to create public products and resources that make it easier and reduce barriers for investigators interested in joining researchers in the AD/ADRD space. Below are a few recent samplings of these CAPRA-created resources to support that aim.

CAPRA Data Resources</h4
The CAPRA Resources Core has developed ready-to-use datasets and analytic tools (e.g., programming script) to access Cognitive Decline/ADRD healthcare administrative and survey data for dementia researchers. As of February 2022, the following datasets are currently available:

Minding Memory Podcast: Exploring Research on Alzheimer’s Disease and Other Types of Dementia

Minding Memory is a CAPRA-produced biweekly podcast co-hosted by University of Michigan faculty researchers, Matthew Davis and Donovan Maust. In Minding Memory, Matt & Donovan talk with the leading researchers in the field to discuss their interesting work and to give listeners a glimpse at the questions, data, and methods moving the field forward. Current podcasts discuss topics such as the FDA’s approval of a new drug to treat Alzheimer’s (featuring Jason Karlawish) and a conversation with Henry Paulson, director of the Michigan Alzheimer’s Disease Center (MADC) about the many different types of dementia. You can subscribe to Minding Memory on Apple, Spotify, Google Podcasts or your favorite podcasting platform.

CAPRA Seminars

CAPRA leadership is producing pre-recorded mini seminars (~20-30 minutes) to acclimate researchers to topics such as training on data resources, dementia identification (in claim, algorithms, etc.), and important studies in the field. Currently available seminars are linked below with more to come in the coming months.

What We’re Reading

Here you will find hand-picked reading material from CAPRA leadership & colleagues that highlight articles that are current, high-impact, and relevant to CAPRA & AD/ADRD. Each article is accompanied by a statement as to why it was selected. Please note, a subscription or institutional access may be required to view these articles.

Matt Davis, MPH, PhD is reading…

Alexander GC, Emerson S, Kesselheim AS. Evaluation of Aducanumab for Alzheimer Disease: Scientific Evidence and Regulatory Review Involving Efficacy, Safety, and Futility. JAMA. 2021;325(17):1717-1718. doi:10.1001/jama.2021.3854
This article provides a nice overview of the issues regarding the approval of Aducanumab for the treatment of Alzheimer’s disease and discusses how one trial exerted so much influence over the FDA’s decision. It’s a short commentary that can get you up to date on the basic details of the Aducanumab trials.

Ken Langa, MD, PhD is reading…

Alexander GC, Knopman DS, Emerson SS, et al. Revisiting FDA Approval of Aducanumab. New England Journal of Medicine. 2021;385(9):769-771. doi:10.1056/NEJMp2110468
The article is an NEJM Perspective that reviews the controversial FDA approval of aducanumab (Aduhelm) that happened in June 2021. The authors of the article include a number of the members of the FDA advisory panel that voted overwhelmingly against approval of the drug. I think the article provides a balanced view of the key issues and implications of the controversial decision.

Donovan Maust, MD is reading…

GBD 2019 Dementia Forecasting Collaborators. Estimation of the global prevalence of dementia in 2019 and forecasted prevalence in 2050: an analysis for the Global Burden of Disease Study 2019 [published online ahead of print, 2022 Jan 6]. Lancet Public Health. 2022;S2468-2667(21)00249-8. doi:10.1016/S2468-2667(21)00249-8
The enormous team of investigators use the global burden of multiple dementia risk factors (body mass index, fasting plasma glucose, smoking, physical activity, blood pressure, education, alcohol use, and air pollution) to create country-specific estimates of the burden of dementia from now through 2050. Long story short, the global number of people with dementia is expected to triple, but there are pretty dramatic differences between countries, with particularly large growth in the Middle East and Africa.