News & Updates

Update Your Records: New AMP PD Data Use Agreement

Data Use

Due to recent changes in the data sharing environment and addition of data from clinical cohorts from a wider range of countries, AMP PD has updated the language in its Data Use Agreement (DUA) for Tier 2 data access. We’ve also made some clarifying changes based on the questions that you, the user community, have asked over the last few years.

While many of these changes won’t impact how you use AMP PD data, we want to draw attention to one update that changes what actions researchers can take with the results of their analyses. For users of the Tier 2 Global Parkinson’s Genetics Program (GP2) data sets, please carefully review the changes in DUA Section 16.b. on intellectual property (IP) rights.  GP2 is incorporating data sets from around the world at high volume; these changes are intended to provide more appropriate protection for research participants from particularly underrepresented populations.

It is important to note that while AMP PD is focused on defining the IP around prioritized molecular targets, these IP policies do not reach through to molecules that are later discovered to be active against the target(s).  It is not AMP PD’s intent to block IP on potential drugs for PD patients later identified through use of pre-competitive AMP PD-related discoveries, such as targets.

The AMP PD team recommends that all AMP PD researchers review the new DUA language on the website: https://amp-pd.org/researchers/data-use-agreement.  The terms within this DUA will apply to use of the AMP PD data moving forward.  This new DUA version will be what all researchers execute for data access moving forward, including all existing researchers during their yearly renewals for data access.

If researchers have any questions about the update to the DUA, they can review the FAQs related to the DUA or contact the AMP PD team through the ACT@amp-pd.org email.