Information for Participants

The Tissue Bank coordinates the collection, storage and distribution of a large variety of paediatric specimens including blood, saliva containing cheek cells, bone marrow, cerebral spinal fluid and post-operative solid tumour specimens. 

 
Samples are collected at different stages of clinical care. This is routinely done to aid in a patient’s diagnosis prior to treatment, during the course of treatment to monitor progress, or after treatment to determine outcome.
 
 
 
 
 
 
Dr Louise Ludlow (Tissue Bank Coordinator) processing a blood sample.
 
 
 
Participation involves: 
  1. Storing any sample(s) left over from clinical care tests. These samples include tissue samples such as a biopsy, blood, bone marrow or CSF.   
  2. Taking a small amount of extra blood (approximately 1-3 teaspoons) at different stages of care. This is done during blood collection for clinical purposes but is additional to that needed for clinical testing.  
  3. Taking a small amount of extra bone marrow and/or CSF during collection of these samples as part of clinical care (up to 5-6 occasions), specifically for research purposes.  Obtaining additional samples at the time of clinical sampling will not require additional passes of the needle during the aspirate procedure. Rather, an increased volume of sample will be collected.
  4. Using stored blood-derived products which were not required for treatment.
  5. Collect a saliva sample containing cells. This can be used to isolate genetic material (DNA) for ethically approved research.
  6. Accessing medical records. This may include age, gender, race, family health history, information including test results, medical procedures, images (such as scans) and medicines taken. This information will be used for research purposes. Hospital medical records will be accessed on a regular basis.
Participants are also requested to consider the following additional aspects of tissue banking:
 
Creating a cell line and an induced pluripotent stem cell (iPSC) line
1.   A cell line consists of cells from different types of tissue or blood that can be grown in the laboratory.  This allows the creation of a continuous supply of material for research purposes and reduces the need to collect further samples.  Some cell lines will only grow for a limited period of time while others may become ‘immortal’. Cell lines are used to discover how cancer develops and to test new therapies in preclinical models, prior to testing in children.
Creating an iPSC line uses technology which allows cells to be reprogramed to stem cells which can then be turned into many different cell types.  This means we can study the specific type of cell that is not working properly in an affected individual.  These cells give researchers more information about cell function to discover how cancer develops, providing clues on how to prevent or reverse it.  
Access to Newborn Screening card
2.  If children were born in Victoria we request consent to access the Newborn Screening card stored at the Victorian Clinical Genetic Services (VCGS).  All newborn Victorian babies have a heel prick blood test taken in the first few days of life.  This program is funded and supervised by the Victorian government.  A midwife does the heel prick and the blood is tested for serious and treatable diseases.  The remaining spots of blood are stored as a Newborn Screening card at VCGS under the provisions of Health Information Privacy Legislation of Commonwealth and State governments.  We request consent to use this blood for research related to the child’s original diagnosis, researchers aim to investigate the interaction of genetic and environmental factors over time.  Each Newborn Screening card usually has 4 dried blood spots.  We request access to a single dried blood spot.  If consent is given to use the Newborn Screening card for ethically approved research, at least one intact blood spot will be retained at VCGS.
Notification of genetic testing results
3.  It is possible that samples may be used for genetic research aimed at understanding the diagnosis.  In many cases the results of genetic tests will not be given as often, the significance of such findings at this time are unclear from a clinical viewpoint.  Genetic testing may reveal an increased risk of developing a condition but cannot predict whether somebody will actually develop the condition.  If consent is given and we find a change in the child's genes that might be an important risk factor for disease based on current knowledge, participants will be contacted by a member of the VCGS.
 
The flow chart outlines how the specimens will be used
Samples are collected at different stages of patient care. This is routinely done to aid in a patient's diagnosis prior to treatment, during the course of treatment to monitor progress, or after treatment to determine outcome.
  • The majority of samples are collected during clinical care including diagnostic procedures.  Some additional samples, specifically for research purposes, may also be collected at the same time as clinical sampling (pending appropriate consent).
  • Samples will be processed for storage in the Tissue Bank and may be accessed if required for further clinical testing.  It is important that priority is given to using these samples for any further clinical tests that are needed. 
  • Pending appropriate consent, samples may also be used as part of ongoing research studies, such as a clinical trial aimed at testing new cancer treatments. In this case, families will be provided with full information about the research and invited to participate in a separate consent process. 
  • In the event that samples exist in excess of what is needed for ongoing clinical purposes, they may be used for scientifically and ethically approved research studies (both local and international).  Samples will only be provided to scientists who have made a formal application to the Tissue Bank.  All applications will undergo thorough scientific review by the Tissue Bank Access and Oversight Committee. 
No samples needed for ongoing clinical care will be used for research purposes.
 
Your decision to give permission for sample(s) and information to be kept in the Tissue Bank, will not affect any treatment or care you receive in The RCH.

Samples are stored in a secure environment in the vapour phase of liquid nitrogen at the Murdoch Children's Research Institute.