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DIVERSE
PD
DIVERSE
PD
Consent and Data Protection
Your choice to take part
Taking part in DIVERSE-PD is entirely voluntary. Before deciding whether to participate, please read the information in the Participation Process section and our Participant Information Sheet, explaining the purpose of the research, what participation involves, and the potential benefits and risks.
You will have the opportunity to ask questions and discuss the study with the research team before providing informed consent. You can choose not to take part, or withdraw at any time without giving a reason. Your decision will not affect your usual medical care.
What information do we collect?
To understand the genetic factors associated with Parkinson’s disease, we collect information about your health, medical history, family history and other relevant characteristics. This may include information from questionnaires, research appointments, medical records and genetic analyses of samples you provide.
We only collect information relevant to the research purposes explained in the Participant Information Sheet and consent form.
How do we protect your privacy?
DIVERSE-PD is part of the International Genomics Collaboration research study, which has been approved by an independent ethic committee and is registered with the Health Research Authority (IRAS ID: 310045).
Your personal details, such as your name and contact information, are kept separate from the research data. Your research information and samples are labelled with a unique study code, rather than your name. Access to identifiable information is restricted to authorised members of the research and clinical teams, and appropriate security measures are used to protect your information.
All information and data we collect from you is stored safely and confidentially and complies with the Data Protection Act 2018.
How will my data and samples be used?
Your information and biological samples will be used to investigate the genetic causes of Parkinson’s disease and support related research. Genetic analyses may include advanced sequencing techniques to help identify and understand genetic changes.
With the appropriate consent and safeguards, coded research data and, where separately agreed, biological samples may be shared with approved researchers and research organisations in the UK and internationally. This may include academic institutions, biobanks and commercial organisations conducting approved research.
Research findings will be published in scientific journals and shared with research and patient communities. Reports will not identify you personally unless you have specifically consented to the relevant use, such as certain photographs or videos.
Your information will not be used for marketing or to make decisions about your access to services or care. You will not receive financial benefits from discoveries using your samples or data.
Questions about consent or data protection?
If you have questions about how your information or samples will be used please contact the DIVERSE-PD research team.
Email: diversepd@ucl.ac.uk
For full details, please read the Participant Information Sheet and the consent form provided by the research team.
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