What does taking part involve?
People with blood cancers
Patients visiting their haematology ward or outpatient clinic and children at Starship and their carers will be asked if they are interested in contributing samples for MegBio. They will be given an explanation by their usual doctor or nurse and paperwork to sign if they agree. Taking part involves the following:
- Allowing us to use samples that are left-over from routine tests and would otherwise be discarded and/or taking some extra blood or bone marrow at the same time as routine tests if this is possible. People having venesection (therapeutic blood donation) for polycythaemia may donate their discarded blood.
- We may ask again for samples, if patients are scheduled to have more blood tests or bone marrow biopsies at future intervals, e.g. every 6-12 months, but this is always optional.
- We also request permission to collect patients’ information about their blood condition and treatment from their medical records to help interpret our research findings. This may include family medical history and potential risk factors.
Good to know
- MegBio does not involve any treatment, extra visits or tests other than what patients would normally have for their usual care.
- Patients can be enrolled at any stage and do not need to give samples before starting treatment.
- Study samples and data will be kept completely confidential and secure at the University of Auckland. They will be coded with a unique study number, which can only be linked if necessary by study staff to personal identifiers such as names and date of birth, and will not be used in any reports about the study.
- MegBio is exploratory research intended to help patients in the future, but is not designed to give back any useful personal results to participants at this stage.
People with normal blood or bone marrow
- MegBio will sometimes seek normal blood and bone marrow for comparison purposes (“normal controls”). Bone marrow will only be sought from patients undergoing bone marrow biopsy for other reasons and found to be normal. Usually this result is not known until their sample is checked in the diagnostic lab, so they may be approached for permission to use their left-over sample a day or two later.
- Blood samples will be obtained from healthy volunteers, such as patients’ friends or relatives, or blood donors.
Note: We will never ask anyone to undergo a bone marrow biopsy just for this study.