PreDADQoL – Ethical and Legal Framework for Predictive Diagnosis of Alzheimer’s Disease: Quality of Life of Individuals at Risk and their Close Others
ERA-NET NEURON (Call 2015)
The PreDADQoL Project aims to develop a theoretical and practical operational framework in order to lay down the basis for managing the situations that people has to face when they are told that in the future they may develop Alzheimer's disease.
PREDADQoL (Ethical and legal framework for Predictive Diagnosis of Alzheimer's Disease: Quality of Life of individuals at risk and their close others) aims to develop a regulatory framework (ethical and legal) that will improve the assessment and communication of the diagnosis to people who experience mild cognitive impairment.
The project aims to provide such a framework and guidance by combining an ethical approach focusing on a broad concept of quality of life and a legal approach addressing key legal issues with a transnational empirical project. Fundació ACE participates in this study with two German centres: the University of Cologne and CERES (Cologne Center for Ethics, Right, Economics and Social Sciences of Health).
The PreDADQoL study allows to know the attitudes and expectations, as well as the effects on the subjective quality of life of patients with Mild Cognitive Impairment (MCI) and their relatives before and after the prediction of Alzheimer's. This unique transnational and empirically informed policy approach is urgently needed in the face of the rapid global expansion of the application of predictive diagnosis of the disease.
The study, led by Dr. Mercè Boada, co-founder and medical director of Fundació ACE, also allows to address the perspective of people with cognitive impairment themselves, as well as their caregivers and family members, and to get a more personalized approach to how they experience the diagnostic process, in order to develop strategies to better address their needs.
Evolutionary process towards dementia
The latest advances in biomarker research now allow for the predictive diagnosis of Alzheimer's disease in people with mild cognitive impairment. Up to 80% of MCI cases with positive biomarker pathology will progress to dementia within 5 years. In people with MCI but without evidence of biomarkers, less than 10% go on to have dementia. Therefore, the 100% prediction has not been reached.
Although there is no effective treatment to prevent Alzheimer's, the determination of predictive biomarkers is increasing quickly and is often even demanded by patients. However, there is currently no framework on the ethical and legal aspects of this type of predictive testing, and there is no guidance for physicians and clinicians on how to advise people with Mild Cognitive Impairment.
Sponsors / Funders
Health Strategic Action 2015 (ISCIII) / ERA-NET NEURON.
“European Research Projects of ELSA of Neuroscience”.
Project leader at Fundació ACE
Dra. Mercè Boada, neurologist, co-founder and medical director
- Cologne University (Germany)
- CERES (Cologne Center for Ethics, Right, Economics and Social Sciences of Health).
- Fundació Grífols
- Fundació ACE
- Universidad Pontificia Comillas (Madrid)
Links of interest
- Project website
CERES – Cologne Center for Ethics, Rights, Economics, and Social Sciences of Health
- CERES website
- Cologne University
Cologne University website
- ERA-NET NEURON II
Counseling and disclosure in risk prediction of Alzheimer’s dementia: impact on MCI patients and their caregivers—The PreDADqol Study
Alzheimer's and Dementia; July 2018, Volume 14, Issue 7. doi: https://doi.org/10.1016/j.jalz.2018.06.2477.
Ayda Rostamzadeh, Carolin Schwegler, Silvia Gil, Gemma Ortega, Pilar Canabate, Mariola Moreno, Björn Schmitz-Luhn, Mercè Boada, Frank Jessen, Christiane Woopen.
Risk knowledge of MCI patients in predictive diagnosis of Alzheimer’s dementia: preliminary data of a mixed method approach—the PreDADqol Study
Alzheimer's and Dementia; July 2018. DOI: 10.1016/j.jalz.2018.06.318.
Rostamzadeh, Ayda; Gil-Navarro, Silvia; Ortega, Gemma; Cañabate, Pilar; Moreno, Mariola; Boada, Mercè et al.