Who are we?
ReproRegistry is funded and operated by REPROCELL, a contract research organisation specialising in services to advance drug discovery. We recruit volunteers to our medical research volunteer register and we match individuals to innovative research studies that rely on human tissue and clinical participation — to develop safer, more effective treatments. We undertake these studies in house and in collaboration with academic and industry partners.
We are registered with the Information Commissioner’s Office (ICO) to process personal data and special categories of information under the Data Protection Act 2018.
Why do we collect personal information?
ReproRegistry is a consent-to-contact register of medical research volunteers who can be invited (re-contacted) to take part in biological and medical research. Studies often require volunteers to be in a particular age range, living with a particular condition, or taking a specific treatment. For each research study we undertake, we search the register for likely or best suited candidates, then our registry team will carefully check the information held on file before sending out an invitation to participate in a study. For the re-contact element of the registry to work, we need to know who you are.
- Volunteers always have a right to decline these invitations, and have a right to see, correct or delete data that we hold on the consent-to-contact register about them.
- The studies we support are run by REPROCELL researchers in conjunction with academic and pharmaceutical industry partners. All research studies undertaken will have appropriate ethical approval in place prior to recontacting you.
- Personal information may be held in a variety of formats, including electronically, in our secure database, in other computer systems, and in paper format.
What personal information do we collect about you?
Personal information about you is collected directly from you through the initial registration form or via interview (telephone or email) with an authorised representative of the registry.
We will collect and hold the following basic personal information about you:
- your name, including your preferred name
- address
- telephone numbers including your mobile number
- date of birth
- your email address
In addition to the above, we may also hold sensitive personal information (as declared by you) such as:
- ethnic origin
- information about your health
- your lifestyle
- any treatment or medication that you take
It is important for us to have a complete picture of you as this will assist registry staff when inviting you to participate in a research study.
What do we do with your personal information?
Where possible, we always look to de-identify your information for handling purposes. Only authorised registry staff will have access to your personal identifiable information.
We will assign a unique reference code to your information once we receive it. Your personal identifiable information (name, address, email address etc) will be held separate to other information we hold but with the same unique code. This enables searches to be performed on your data without your identifiable information being available. We can rematch the unique code to identify and contact you regarding suitable research studies if matched. The main use of your data is to perform the matching service and recontact you with an invitation to participate in research studies. By completing the volunteer registration form you are providing consent for this use.
Your information may also be used for the following:
- To send you relevant correspondence
- To prepare statistics and reports on the use of the registry
- To report and investigate any complaints or incidents
- To report events to the appropriate authorities if required to do so by law
- To contact you for feedback on your experience
- To inform you of registry news and activities (you may opt-out of this type of correspondence if you so wish)
Will we share your personal information with others?
No. Your personal identifiable information will never be shared (unless required to do so by law).
Once matched and consented to a study your de-identified information may be shared with the researcher conducting the study through the use of the unique reference code. This information may be required to help understand and interpret study findings. Dependent on the specific ethical approval for a study, you may also be asked to provide and share additional information on your health and treatment. This will be discussed and explained when invited to take part in a research study.
Your information will never be shared upon request from third parties, e.g., insurance companies.
Your information will never be shared or sold for monetary profit.
How do we maintain and keep safe information about you?
Information will be held in electronic or paper format within secure buildings and computer servers. Access to buildings and computer servers will be restricted to REPROCELL authorised users and the latest/most up to date security measures implemented.
We will hold and process your information in line with the Data Protection Act 2018 and the General Data Protection Regulation (2016).
All registry staff will be fully trained in confidential handling of information and will take appropriate training in both data protection and information security.
All systems will be regularly audited and tested to ensure compliance and absence of data breaches.
All information will be retained for the duration of the volunteer registry as a commercial entity by REPROCELL.
What are your rights under data protection law?
You have the following rights under the Data protection Act 2018:
- Request access to the data that we hold on the database about you
- Request the correction of inaccurate information about you
- Withdraw your consent for the use of you information
- Delete your personal data from the database
If you wish to discuss how we handle your data, or raise a complaint on how we handle your data, you can contact us at reproregistry@reprocell-europe.com.
If you are not satisfied with the response from REPROCELL’s Data Governance Team or believe we are processing your personal data not in accordance with the law you can contact to the ICO at https://ico.org.uk/global/contact-us/