Informed Consent Form

Title of Project: CloudUPDRS: Big Data Analytics for Parkinson's Disease patient stratification.

This study has been approved by the Department of Computer Science, Birkbeck College Research Ethics Committee

I would like to invite you to participate in this research project. You should only participate if you want to; choosing not to take part will not disadvantage you in any way.  Before you decide whether you want to take part, it is important to read the following information carefully and discuss it with others if you wish.  Ask us if there is anything that is not clear or if you would like more information. If you decide to take part you will be given this information sheet to keep and be asked to sign a consent form.

The CloudUPDRS project is an Innovate UK funded research collaboration between the UCL Institute of Neurology, Birkbeck College University of London, Benchmark Performance, Retechica and Audience Focus. Our collaboration aims to develop a mobile app that will allow doctors to observe in detail how Parkinson’s disease progresses, identify trends and patterns of daily symptom variation and in particular the onset of side effects of medication with L-Dopa such as dyskinesias.

I am requesting your participation today as a Parkinson's Disease patient. If you agree to continue to take part, you will be provided with login credentials that will allow you to use the CloudUPDRS app on Android to access the system. You will the be able to use the app for as long as you would like within the next six months to record motor performance tests. All the information you give will be completely anonymous.

The purpose of this testing is to further develop the patient experience. It is not a clinical study and the data and results obtained by the CloudUPDRS system will not be suitable to make or change your diagnosis or alter your medication. Your experience as a PD patient and your views on how this app can be further developed to fit with your needs n the future is the sole focus of this work.

It is up to you to decide whether to take part or not. If you decide to take part, you are still free to withdraw at any time, without giving a reason. At any point you are also free to request that any anonymised data collected by your use of the app are discarded.

All data will be collected and stored in accordance with the UK Data Protection Act 1998.

George Roussos
Professor of Pervasive Computing
Department of Computer Science and Information Systems
Birkbeck College, University of London, Malet Street, London WC1E 7HX

 
Participant’s Statement

By using this application you agree that you    

•       have read the notes written above and the Information Sheet, and understand what the study involves.
•       understand that if I decide at any time that I no longer wish to take part in this project, I can notify the researchers involved and withdraw immediately.
•       consent to the processing of my personal information for the purposes of this research study.
•       understand that such information will be treated as strictly confidential and handled in accordance with the provisions of the Data Protection Act 1998.
•       agree that the research project named above has been explained to you to your satisfaction and you agree to take part in this study.