How to Opt Out
This data linkage study will include participants who were part of the following clinical trials:
| Myeloma X | MUKFive |
| Myeloma XI | MUKSix |
| MUKOne | MUKSeven |
| MUKThree | MUKEight |
| MUKFour | MUKTwelve |
How to opt out
Participants may opt-out of this follow-up project by contacting Leeds CTRU. A family member or carer can also do this for you if needed.
If you previously withdrew your consent for further data to be collected about you during the trial, your details will not be included in the study.
If you were recruited into one of the listed clinical trials and wish to opt out of this data linkage study, we will require your initials, date of birth and NHS number and trial identifier (if known).
There are a number of different ways to contact the team to request to opt out of the study:
1) Complete the Opt Out Questionnaire
2) Request a phone call from a member of the BLISS team by completing the Telephone Opt Out Request form.
3) Contact your clinician/trial team at the hospital where you were recruited to take part in one of the studies listed above. The trial team will then contact a member of the BLISS team on your behalf.
4) Write to the BLISS team at Leeds CTRU to request to opt out of the study. When writing to us, please ensure to include your initials, date of birth, NHS number and a contact number or e-mail address (in case we need to contact you to confirm your details).
BLISS
Clinical Trials Research Unit
Leeds Institute of Clinical Trials Research
University of Leeds
Leeds
LS2 9JT
The information you provide to us will be stored securely on our servers at the University. Only the research team will have access to this information, which will be securely deleted when the study ends. We will only collect data that we need for this study and will only use it for this study and not for any other purpose. We will not share the data with anyone else.
The University of Leeds is responsible for what data is collected, what it is used for and making sure it is used correctly and legally (this means they are called the ‘data controller’). You can ask to see the information we have about you, or have it corrected or deleted. You can also ask for us to stop using your information or only use it in specific ways that you allow. If you would like to do any of these things, please contact the research team on: [email protected]
For more about how data is used at the Leeds Institute of Clinical Trials Research go to https://ctru.leeds.ac.uk/privacy/