Towards a national registry for Alzheimer's disease and related dementias: rationale, design, and initial observations of the ABOARD cohort.

Abstract

Background: Alzheimer's disease and related dementias (ADRD) take 20 to 30 years to develop, yet setting up studies or registries that take into account the entire disease trajectory is difficult and time consuming. Moreover, prediction models are often based on selected research populations and their outcomes may not be most relevant to patients' daily lives. To address these gaps we set up the ABOARD Cohort, a national data collection infrastructure to (i) study the disease trajectory using patient reported outcome measures (PROMs) and medical data, (ii) link to available data sources, and (iii) serve as central platform to facilitate research, roll out healthcare innovations, and accommodate nationwide disease registration. Here, we describe the design of the project and characteristics of the first 10,275 participants.

Method: The ABOARD Cohort is an ongoing, participant-centered data-collection, taking PROMs and a minimal case report form (CRF) with relevant medical data as starting point, supplemented with linkage to existing data sources. Eligible participants with or at-risk of ADRD a and their study partners are recruited directly-to-participant, i.e. without the need for a doctor to sign informed consent. Informed consent and annual collection of PROMs are fully online. Relevant stakeholders are involved in decisions on project development through a participants panel and on data usage through a data access committee.

Results: The ABOARD Cohort has been fully operational since January 2023. As of October 2024, 10,275 participants (mean age 66.1 (9.2) years, 70% female) and 1,383 study partners signed up, and received an invitation to fill in online questionnaires and complete a digital cognitive test. Over 90% of participants gave consent to link their data to existing data sources. Participants who had consulted a doctor for memory problems (N = 1,128), reported worse outcomes on PROMs assessing mental health and cognition, quality of life and lifestyle, compared to those who had not.

Conclusion: The ABOARD Cohort has been set up as a national infrastructure to study ADRD disease trajectories, linking data-sources, with the participant at the steering wheel. This infrastructure has the potential to serve as a registry to advance research and roll out healthcare innovations on a national level.