Your data in the Parkinson's Families Project

How is my information kept confidential?

We will code your sample, so that a number rather than a name is used in further analysis. The link between the code and your name will be kept confidential, and your personal contact details and identifiable medical details will be kept secure on a highly secure database. We will share some of your personal details with NHS Digital and receive health status data back from NHS Digital, through encrypted secure communication. Coded samples and data (i.e. without your name) may be shared with other research groups around the world for analyses.
We will store the study results centrally on a separate, highly secure web-based database. This will enable us to analyse the information gathered for this research. When this study is completed we will continue to hold the data on our computer network. You may ask for your personal information to be removed from the databases at any time, in accordance with the Data Protection Act 2018 and the General Data Protection Regulation (GDPR).

What will happen to the information collected?

We will collect and hold personal data and research data.

Personal data: We will hold written records linking participants’ study codes with personal identifiable information which will be stored securely in locked filing cabinets, and on a highly secure database meeting the highest standards (Information Governance Toolkit guidelines and ISO27001 certification).We need to store your name and contact details so that we can monitor your future health and care.

Research data: Research study data will be entered and analysed anonymously using study codes.Data security will be managed within local standard operating procedures. This anonymized research data will be hosted centrally through a separate, secure web based database holding research data without personal details.Access to the central database will be protected and restricted to members of the research team.You may provide consent and complete study questionnaires from home using a highly secure, encrypted web connection, although these can be completed in hand written, paper format.

Collaboration: Anonymous study information may made available to collaborators at other sites in the UK and overseas and may be made publicly available to bona fide researchers to enable the combined analysis of samples from different, large patient series around the world.This may include commercial companies.These are rare conditions and it is likely that sharing and collaboration between research groups and companies in different countries will be needed to make the best use of the study.Transfer of study data will be managed in a highly secure and anonymised format.

Who will manage the information?

UCL is the sponsor for this study based in the United Kingdom. We will be using information from you and your medical records in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. UCL will keep identifiable information about you for 20 years after the study has finished. Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible. You can find out more about how we use your information by contacting the team.

UCL will collect information about you for this research study from the local NHS site at which you joined the study, your local GP and NHS Digital. This information will include your name, date of birth, NHS number, contact details and health information, which is regarded as a special category of information. We will use this information to link to your genetic information, so we can study how genes may influence Parkinson’s risk, symptoms or progression.