TRANSPERS awarded NIH grant to tackle challenges of using precision medicine to identify risk for Alzheimer’s and related dementias

Alzheimer’s Disease and Related Dementias (ADRD) present huge challenges for patients, health care providers, and the healthcare system. One of these challenges is how to best identify those at risk of developing dementia. Direct-to-consumer testing labs offer testing for one gene associated with late-onset Alzheimer’s risk (APOEε4), although such testing is not recommended by clinical guidelines. Little is known about whether insurers cover genetic risk testing, whether risk testing could provide economic value, and how primary care providers are managing their patients who obtain APOE testing.

TRANSPERS has received a grant from the National Cancer Institute in conjunction with the National Institute on Aging to develop conceptual frameworks and methodological approaches to examine the economic, financial/coverage, and policy implications of genetic testing for ADRD risk. We are addressing key questions:

• Are insurers covering genetic risk testing for ADRD, and if so, under what scenarios? What rationales and evidence are provided for coverage or non-coverage? How does coverage vary by payer and type of dementia? Is coverage congruent with clinical guidelines and test availability?
• How are primary care physicians handling patients who present with APOE results obtained from DTC or hybrid labs? What will they need in order to manage these situations?
• What are the economic issues that will need to be examined in order to develop effective and efficient practices and policies for ADRD genetic risk testing?

The dynamic surrounding APOE testing, including consumer access to testing despite the lack of known clinical utility and with results provided to consumers outside of the clinical care context – represents an overarching challenge that we believe will increasingly become a clinical, economic, and policy conundrum. Exploration of such issues in testing for APOE and genetic risk scores for ADRD provides a paradigm for evaluating similar forthcoming tests in other conditions.

This work will be accomplished with a multi-disciplinary team that combines expertise in precision medicine and dementias: Kathryn A. Phillips, PhD; Jalayne Arias, JD; Jeroen Jansen, PhD; Maren Scheuner MD MPH; Grace Lin, MD; Jennifer Yokoyama PhD; Ana Tyler JD, MA; Michael Douglas, MS.