The AMYPAD Prognostic and Natural History Study (PNHS) has had a successful 2024, continuing to make significant strides despite being in the post-funding period. In this article, we provide an overview of the PNHS data accessibility, a snapshot of the year 2024, and a glimpse into the future with the Euro-PAD consortium.

PNHS Data Access

The valuable data generated by the PNHS is available to the research community by submitting a data access request through the Alzheimer’s Disease Data Initiative on the AD Workbench. In 2024, we approved 12 data access requests from researchers around the globe, involving a range of backgrounds, topics, and research questions.

Snapshot of 2024

Several advancements enriched the PNHS landscape:

1. Global Engagement: Results from the AMYPAD PNHS were presented at multiple conferences such as AD/PD, AAIC, and CTAD.
2. Collaborative Symposium: We held our second Euro-PAD symposium in Amsterdam, kindly sponsored by GE HealthCare and Life Molecular Imaging, which showed the strength of cross-cohort and pan-European collaboration, sparked by our work in the PNHS. The third symposium is planned for early summer 2025 in Barcelona.
3. Scientific Contributions: The year saw the publication of eight papers linked to the PNHS.
4. Dissemination activities: Numerous activities were performed including newsletters, social media, flyers, and lectures.

The Future of the PNHS Dataset

The work performed by the AMYPAD PNHS group was not concluded with the release of the integrated dataset in June 2023. Multiple activities have been performed over the past months to further improve and expand the dataset (e.g. genetic data harmonisation and MRI and PET quantification). This work has been partially supported by the Alzheimer’s Disease Data Initiative through a three-year contract signed with VUmc. Ongoing efforts focus on maintenance tasks (i.e. ensuring data quality and supporting researchers in data access), enhancement of the data set (i.e. inclusion of new variables), and integration of new cohorts in the PNHS dataset. Moreover, we plan to release an enhanced PNHS dataset early 2025 with these variables, as well as release the raw version of the dataset.

From AMYPAD PNHS to Euro-PAD:

While the PNHS is centred around amyloid PET, the growing interest in other biomarkers (e.g. genetics, plasma, advanced MR, tau PET) prompted the evolution into the Euro-PAD consortium, a new community with a broader scope. This initiative builds upon the collaborative framework of AMYPAD, expanding its horizons by including more data sources and parent cohorts, always with a focused interest in the early detection of Alzheimer’s disease. Euro-PAD consolidates and expands previous partnerships, including cohorts like EPAD-LCS, EMIF-AD, AMYPAD-PNHS, ALFA+, Prevent-AD, Microbiota, and SCIENCe. We are always looking for interested cohorts to join our initiative and help build the largest pan-European predementia cohort for all to access!