What research are you going to do with my data?
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.
A de-identified copy of your data will also be sent to a research database, for further research and analysis by approved academic researchers.
Access to data for purposes of research is overseen by a Data Access Committee chaired by the Cure Parkinson's Trust (a UK patient group). The Committee will require all researchers to state their research question. We will encourage all research to be published in open access journals.
All researchers must maintain confidentiality and respect the anonymous nature of the dataset.
We plan for the data to be used by researchers now and far into the future – so you are making a valuable contribution. 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
What happens to my data?
The app sends your data to a secure database on the uMotif server, where your data is held.
You own your data and can ask for a copy of it at any time during or after the study.
Part of your data will then be sent to the research database. This will not include your name, email address or other information that can identify you – known as ‘de-identified data’.
We will keep your data safe and secure. The uMotif platform is certified to NHS Information Governance standards and a HIPAA secure system is implemented in the United States.
Can I access my data?
As a participant, you can view or export your data any time you want for free. For your own security, we may ask you to prove your identity as part of a request to access your data.
Just email 100ForParkinsons@umotif.com and we will send you a data extract from your account.
You can withdraw your consent and discontinue participation at any time. Email us at 100ForParkinsons@umotif.com to let us know.