Before taking part in the study there are several things to consider. It is important that you understand the information provided, you are confident in how the study is being run and you understand your involvement. This is a legal requirement for all research conducted in the UK.

The Rapsodi study has been reviewed and approved by an independent ethics committee at Queens Square, London on July 16th 2015 (reference number 15/LO/155) and fulfils all these legal obligations.

All information and data we collect from you is stored safely and confidentially and complies with the Data Protection Act 1988

Consent

We will ask you to read about the study and how you can be involved (see participant information sheets below). When you have decided you wish to take part, we will ask you to consent to us collecting and storing your data.

• Participant Information Sheet People with Gauchers Disease
• Participant Information Sheet for Relatives/Spouse of people with Gauchers Disease
• Participant Information Sheet for People with Parkinsons Who Know They Carry a GBA Mutation
• Participant Information Sheet for Relatives/Spouse of people with Parkinsons
• Participant Information Sheet for People Who Know They Carry a GBA Mutation
• Participant Information Sheet for People Who Don’t Fit Any of the Categories but Want to Take Part
• Consent Form

Taking part in the study is completely voluntary, there is no obligation to take part and you can withdraw at any time for any reason, even if you have already given your consent.

Keeping your data safe and confidential

We ensure that all personal data is treated with utmost sensitivity and security and the study is designed to make this a key priority. Your data is kept anonymous by separating your personal details from the data collected. We do this by allocating codes to each participant and encrypting data with the same technology used in international banking. Only a very small number of people who have been approved and vetted will have access to the encryption software. The data collected will only be used for the purposes of the study.

If you want to discuss any of this further please contact the study team rapsodi@ucl.ac.uk

If you would like to join the study please click here