AMYPAD will generate a large amount of high value data for the research community. In order to facilitate research collaboration within AMYPAD and to support external researchers, data set releases will be defined and made available via collaborative workspaces.  These data set releases will only include de-identified and cleaned data.

AMYPAD aims to share the data as soon as possible with the entire scientific community.  All details about the application and registration process will be available in due time.


AMYPAD Diagnostic and Patient Management Study (DPMS)

Recruitment of the DPMS  has been ended in October 2020, with results expected in 2021. The data management activities have been started to ensure a clean dataset for the next step of data analysis.


AMYPAD Prognostic and Natural History Study (PNHS)

Recruitment of the PNHS is ongoing. The AMYPAD PNHS data will be made publicly available in the future and the policies and timelines for data sharing are being finalised.

Download the Data Dictionary or all data collected and shared by the Parent Cohorts of AMYPAD PNHS here. This document will be updated regularly to reflect latest composition of Parent Cohorts in the study, and in the future will include details on the harmonization of variables across cohorts.