The predictive turn in Alzheimer’s disease (PreTAD)

Abstract

AbstractBackgroundDiagnostics for early detection and risk prediction in Alzheimer’s disease (AD) are constantly evolving. Blood‐based biomarkers may replace more invasive and expensive methods (such as CSF and PET) and lead to a higher accessibility in the detection of AD pathology. These developments may result in an extended availability of risk prediction, also for patients with subjective cognitive decline (SCD) or symptom‐free individuals at risk. The PreTAD project aims at providing data and analyses on people’s perspectives towards prediction as well as the effect of predictive medicine on individuals and society from a clinical, ethical, legal and linguistic point of view.MethodThe empirical survey of PreTAD will focus on three different groups: 150 healthy participants with a family history of AD or APOE4 carriership; 150 participants with previously diagnosed SCD and 90 participants with newly diagnosed SCD ≤ 4 weeks. The participants will be studied with standardized quantitative tests, including newly developed assessments and will be provided with hypothetical scenarios of AD‐biomarker risk outcomes and disclosure. The longitudinal survey will be conducted by specialized Memory Clinics in Cologne, Geneva and Barcelona over a period of 6 months. To achieve a comprehensive approach, the trial design of our interdisciplinary collaboration combines quantitative assessment with qualitative (narrative) interviews, as well as ethical and legal analyses. In this presentation, we report the design of the study.ResultOur study serves to understand the perspectives, needs and preferences of cognitively healthy individuals with increased risk for AD regarding early AD‐biomarker testing and risk prediction of dementia. We will also obtain information on the participants understanding of risk and expectations towards risk prediction. It will also focus on psychological distress during the process of risk prediction, subjective well‐being, quality of life, identity and self‐perception measures as well as the willingness to undertake lifestyle changes and prevention.ConclusionOur trinational project aims to contribute to the urgent need of creating a framework for good clinical practice regarding the prediction of AD in presymptomatic at‐risk‐stages.