Earlier this year, the Global Parkinson’s Genetics Program (GP2) collaborated with the Accelerating Medicines Partnership® Program: Parkinson’s Disease (AMP PD) to provide Parkinson’s disease (PD) genetic data for research of novel drug targets and biomarkers, as well as collaborative cloud-based computing. The AMP PD cloud platform will provide a single, secure access point for data collated and generated by GP2. While GP2 values open science and access, we are prioritizing the safety and security of data through verified researcher authentication in a process which we are excited to share.
Access Request Form and Google Account:
Applying for GP2 data access begins when an investigator applies for access to the AMP PD portal using the Registration Form. Access to data requires a Google Account, whether it be an institutional account, a Google account associated with your institutional email address, or a Gmail account.
Tiered Access:
There are currently two tiers of data access through AMP PD. Users in Tier 1 can access limited individual-level clinical data, omics summary results, and/or related metadata. Tier 2 allows users access to the full GP2 dataset, with individual-level clinical and genetics data, as well as metadata.
Data Use Agreement:
Once users complete an online registration form and verify their email address, they will be asked to electronically sign a Data Use Agreement (DUA) for access to Tier 1-level data. To access Tier 2 data, users must submit a DUA which includes a signature from the user’s Authorized Institutional Signatory (on behalf of the institution under which they will conduct their research) in a PDF format that can be submitted to the GP2 Access Compliance Team via email or attached to the application.
Cohort Objection Period:
In order to promote data fairness and equity, and to ensure GP2 follows all local laws and regulations, all GP2 Cohort Contributors (Principal Investigators) who have contributed data and/or DNA samples to GP2 will receive email notice of all Tier 2 data use requests through AMP-PD. When the institutionally signed DUA is submitted, GP2 Contributors will receive an automated email with the name, institution, and proposed analyses of the investigator who has requested data access. GP2 Contributors will have 120 hours to submit an objection to the data access request, based on history of data misuse, research misconduct or a proposed data use that violates the limits of the consent of participants in the study contributed to GP2. If there are no objections after 120 hours, the data use access request will be approved. If an objection is raised, GP2 leadership will evaluate the objection and come to a resolution.
Data security is of the highest importance to GP2 and AMP PD. Please contact the Operations and Compliance Working Group at [email protected] if you have questions or suggestions about the AMP PD data access process.
