It's always important that people know what's happening with their data, especially in a project as novel as 100 For Parkinson's.
Your de-identified data will be used for research for patient benefit. Data collected during 100 for Parkinson's will be used by the study team (uMotif, Liverpool School of Tropical Medicine) for analysis. This will be based on a de-identified (or anonymised) dataset so that nobody can tell which data belongs to any individual. We will not sell or provide access to the data to any insurance companies or marketing companies.
As part of the 100 for Parkinson's study, an anonymised copy of the data will be sent to a research database. This will be held by a Non-Profit group called Sage Bionetworks - with your personal details will be removed from the dataset, to keep things anonymised. This diagram explains how the data is anonymised:
Access to the research dataset will be overseen by a Data Access Committee, led by The Cure Parkinson's Trust and Parkinson's UK. Access will only be granted to researchers who submit their research question for review by the committee, and the research must be for patient benefit. If you are a researcher and would like to use the dataset for ground-breaking research for patient benefit, please contact us at firstname.lastname@example.org.
When researchers are granted access, this will be for a time-limited period, and will not result in any research groups (or Sage Bionetworks) having ownership of the data. They will only be able to use the data if they agree to maintain individual anonymity.
Our aim is to maintain privacy and anonymity of your data, and ensure that proper researchers - vetted by the patient groups - can use the data to learn more and improve patient benefit.
You can read more about how your data will be used and other topics on our Frequently Asked Questions. Thanks for your interest in 100 For Parkinson's, we look forward to working with you!