Article AMYPAD PNHS (Harmonised and Derived) v202306

What is it and what does it include? 

The Amyloid Imaging to Prevent Alzheimer's Disease (AMYPAD) Prognostic and Natural History Study (PNHS) is a combination of prospective and historical data from multiple European sites in Belgium, France, Germany, Spain, Sweden, Switzerland, The Netherlands and the UK. These sites have provided information through 11 parent cohorts. The current dataset includes a total of 3,368 participants. Among them, 1620 underwent baseline amyloid PET scans, and 888 participants had at least one follow-up PET scan. The participant’s clinical outcomes (e.g., cognition), disease (imaging) biomarkers, risk factors (e.g., genetics and environmental), and other relevant variables are included in the dataset. The dataset is planned to be further expanded, both in terms of parent cohorts and in available data (e.g., quantification of advanced MRI sequences, genetics, blood biomarkers, etc.). 

Has this dataset helped researchers understand Alzheimer’s and other dementias better? 

Of course!  

  • AD & PET: 

In 2022, researchers found that higher baseline centiloids (CL) were associated with lower global cognitive function and attention scores. Whereas, higher CL were associated with a steeper memory decline over time. Current results suggest that cerebral amyloid accumulation is predictive of future overall cognitive function, attention, and memory decline. doi: https://alz-journals.onlinelibrary.wiley.com/doi/full/10.1002/alz.062331 

  • AD & PET: 

In 2021, a study using data from AMYPAD supported the utility of using two cutoffs for amyloid PET abnormality defining a “gray zone”: a lower cutoff of 13.5 CL indicating emerging Aβ pathology and a higher cutoff of 35.7 CL where amyloid burden levels correspond to established neuropathology findings. Quantitation of amyloid provides a sensitive measure in these low-load cases and may help to identify a group of subjects most likely to benefit from intervention. doi: https://alzres.biomedcentral.com/articles/10.1186/s13195-021-00807-6 

  • AD & white matter: 

In 2021, investigators using data from AMYPAD determined that regional amyloid burden is associated with disruption of the WM microstructure in cognitively unimpaired subjects. This association was driven mostly by amyloid burden in the precuneus and it could be most robustly measured in the body of the corpus callosum (CC). Taken together, DTI measures of the body of the CC are promising early AD biomarkers and could, together with amyloid burden, support risk-profiling efforts in preclinical AD subjects. Doi: https://alz-journals.onlinelibrary.wiley.com/doi/10.1002/dad2.12124 

Request access 

Data access can be requested via AD Workbench FAIR portal here. Access requests are reviewed by the AMYPAD team. Once your access has been provisioned, you will receive an email with instructions on how to access the data that you have requested. This process will take up to one month. For a more in-detail look at how to submit a data access request, you can find the data access request procedure for the AMYPAD PNHS here. 

Data Use Agreement 

If you are requesting access to the AMYPAD PNHS, you should accept the responsible use of the data under the terms described here. 

Publishing results using this dataset? 

If you publish results that were generated using the AMYPAD PNHS data, it is mandatory to acknowledge the AMYPAD Consortium and the grants that supported this IMI project. More details are provided in the document here, which outlines the policies for publication and the publication credits for those who use the AMYPAD PNHS data. 

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