The RNOH is a teaching hospital for medical, nursing and allied health professionals. We may introduce students to you. Please allow them to be present during ward rounds and at consultations; however, you have the right to decline their presence at your consultation or access to your information.
RNOH Musculoskeletal Research Programme and Biobank
We are inviting patients to donate tissue and provide the RNOH Musculoskeletal Research Programme and Biobank with access to your clinical notes and imaging records (X-rays and scans).
What is the RNOH Musculoskeletal Biobank?
The RNOH Biobank is a collection of human material including blood, urine, saliva and normal and diseased tissue, for example, bone, cartilage and muscle donated from patients attending various hospitals in the UK and abroad.
What is the purpose of the RNOH Musculoskeletal Biobank?
The purpose of the RNOH Musculoskeletal Biobank is to have tissue available for research projects on musculoskeletal diseases such as arthritis, scoliosis (disease of the spine) and bone and soft tissue (muscle) tumours. The research will take place in the UK and abroad.
Why do we want to study your notes and imaging records?
Research adds to our overall understanding of musculoskeletal disease, and may help to design new ways of diagnosing and treating diseases.
Do I have to take part?
No. Whatever your decision, it will not affect any treatment or care you receive in this or any other hospital, now or in the future.
What will it involve if I decide to take part?
You will be asked to sign a consent form that allows:
- Clinical information to be extracted from your notes and imaging (X-rays and scans) and then analysed by research teams and used in research projects in the UK and abroad
- Storing a small piece of tissue, which is surplus to diagnostic requirements, for research projects including genetic research; genetic analysis of your tissue and blood often explains why diseases such as arthritis, osteoporosis, and cancer develop
- Data to be stored on a secure database
- When required, donation of your blood (up to 50 ml [six to eight teaspoons]) and this may be requested on more than one occasion. Blood sample taking may result in minor discomfort and slight bruising
- If required, collection of urine and saliva specimens
Additional tissue purely for research purposes is not removed at any time.
All these samples will be collected when visiting the RNOH. We will make every effort to take the blood sample while you are under anaesthetic or having a routine blood test. The saliva sample is taken by gently stroking the inside of your cheek with a cotton swab. We may ask for any of the above samples on more than one occasion but you can refuse at any time without giving a reason and without your medical care being affected.
Will my information be kept confidential?
All your information and your tissue samples will be treated with the strictest confidence. It will also be coded so that it cannot be traced back to you by the researcher. Results from genetic studies will be placed on a database to which only authorised individuals have access. Before having access to your clinical information and/or tissue samples, researchers must agree to conditions, which safeguard your confidentiality.
What will happen if I do not want to carry on with the study?
You are free to withdraw your consent at any time. This means that researchers will no longer be able to access your notes and images, and your tissue samples in the Biobank will be destroyed. You do not have to give a reason for changing your mind. However, if the data has already been used it is not always possible to recall it.
If you would like further information or you have concerns about this research, please contact your doctor/nurse, the RNOH Research and Development Office on 020 8909 5529 and/or visit www.rnoh.nhs.uk