Please register again, the web site should now offer you the spare blood option. Alternatively you can email the SHARE team at firstname.lastname@example.org or call us at 01382 383230.
Recent advances in early diagnosis and treatment of disease have been due to understanding genetics and how specific genes influence disease severity and response to certain medications. This is an important growing area of research as the discovery of gene variations could be used to develop new, more effective drug treatments for individuals.
Many people in Scotland have already been involved in genetic studies. For example, 10% of the Tayside population have already volunteered for genetic studies into diabetes, obesity, cancer, heart disease, asthma, eczema and COPD.
The SHARE register will greatly expand the valuable research being carried out in this area.
Every time you give blood for a routine clinical test, a small amount may be left in the tube. This "spare blood" can be a valuable research resource. To do research we need your permission to keep and study any of your blood that is left over after a routine test. This will greatly enhance our ability to study the role of genes in disease and health and to improve future healthcare.
By joining SHARE you are giving permission to access your surplus blood after clinical tests have been carried out. You are also giving permission to securely store this material, carry out genetic analysis and use any of the information gained for further research. This information may also be combined with your coded medical data and we may invite you to participate in future clinical studies.
We will use blood from samples you may give in the future for testing, when you visit your doctor or hospital. You are simply giving us permission to use any of the left over blood after testing is complete. No more blood will be taken than is usual for standard clinical tests. You will not have to give an extra sample.
The key to success in research is to be able to study as many people as possible, and therefore we are asking everyone in Scotland over 11 to take part. This is regardless of current disease diagnoses or drugs prescribed.
SHARE does not access any of the blood you donate to the Blood Transfusion Service. If you are a blood donor please continue to donate.
As you don't have to do anything beyond completing the registration form, there is no extra discomfort, risk or side-effects.
The registration process will take just a few moments to complete. No further action is required on your part, you do not need to come to the hospital, and no special blood tests will be requested. We will only store blood that remains in the NHS laboratory after you have had a test requested by your doctor.
All of the stored samples will be coded so that they cannot be directly traced back to you as the donor. Your identity will be kept separate from your coded samples. Any medical information and samples used in research will have all personal information removed so that it cannot be identified as you.
This type of research is complex and time consuming so we can't say a specific study will benefit you directly, but the knowledge we gain will help to find ways of preventing and treating disease more efficiently.
You are giving consent for samples to be used for genetic research. This may eventually involve the reading of your entire genome (all 3 billion letters of your genetic code), and information may be gleaned that could provide useful information for future treatment. Researchers will not be able to pass any findings on your genome to your GP. Your GP will not have access to your genetic data at any time.
All information which is collected about you during the course of the research will be kept strictly confidential.
A secure code number is used to ensure that your identity cannot be associated with the information obtained from the sample. The genetic data will be collected and stored in secure databases.
We will store some of the sample indefinitely for future research, so that we do not have to ask you again. However, we may retain multiple samples when they are processed by the NHS laboratories. This will be used when the original sample runs out, but will also be used for the analysis of non-genetic biochemical markers that may change through time. For example researchers may seek to examine how molecules change throughout the course of disease, or during specific treatments.
Samples may also be sent to other research groups, including those outside the UK. Some of these research groups may work with pharmaceutical companies. The sample will be anonymised so that you will not be identifiable from it. These transfers of samples will be strictly governed by Tayside Tissue Bank, to ensure your privacy and that appropriate research is being performed.
This register doesn't have a defined end date. We would ask your permission to store your sample and data (in anonymised form) so that we can consider it for use in future research studies. You are free to terminate your involvement at any time.
We are at an early stage of understanding the importance of most of your genetic code, however it is hoped that if any clinically useful information comes to light this may be used to help your treatment. Researchers will produce reports and publications summarising their overall findings of how sequence information may be used to improve health and treatment. Your GP will not have access to your genetic data at any time. However, specific information, which may be important and useful in treating diseases, may be added to your records via strict NHS approved protocols to guide your treatment. For example, if it is found that you have a genetic feature that determines how well you respond to certain drugs, or whether you are prone to side effects of these drugs, then only this information would be included in your records.
The agreement to have future blood stored for research purposes, to be later used and sequenced, is not a diagnostic genetic test and therefore is not required to be informed to insurers.
If you wish to withdraw your sample from the Bioresource , you simply need to tell us by phone and we will arrange for your sample to be destroyed and data removed from the register. We will confirm this by letter
You can withdraw from the register at any time without having to give a reason. We will remove your details and data from the register, and your blood samples will be disposed of after the clinical test has been carried out.
No you will not be paid for agreeing to the use of spare blood. You will not receive any payments from charges that may be levied for access to the samples by third parties including companies and researchers from UK or abroad.
The collection, analysis and research on spare blood is being organised and sponsored by the University of Dundee, funded by the Wellcome Trust. The SHARE register is part of NHS Research Scotland.
The East of Scotland Research Ethics Committee REC1, which has responsibility for scrutinising all proposals for medical research on humans, has examined the proposal and has raised no objections from the point of medical ethics. It is a requirement that your records in this research, together with any other relevant records ,be made available for scrutiny by monitors from the University of Dundee and NHS Tayside, whose role it is to check that research is being conducted properly and the interests of those taking part are adequately protected.
This register has also been reviewed by members of the scientific review board of the Wellcome Trust.