Menu
Save Lives in less than a minute: Register Now

ANY QUESTIONS

What is SHARE about?

What do you mean by "research register"?
Many people in Scotland would like to contribute to health research, but it is often difficult for them to find out what research is happening and which studies they may be suitable for. It is also difficult for researchers to identify suitable people to take part in their research. In some countries patients can place their names and some descriptive details on a register to say that they are willing to be approached about possible participation in research studies.
What about my data?
When researchers want to carry out a healthcare or medical research study, they will approach the custodians of the Register to identify people that are suitable for their study - e.g. age, sex, location; possibly with a specific health condition or on a specific medication, possibly who may be entirely healthy. This kind of question is posed the whole time, and generally all the questioner wants to know are numbers: e.g. "currently 231,000 people in Scotland have diabetes of which 201,000 are Type 2". The difference with the Register is that SHARE can identify how many of these are on the Register and, only if it is appropriate to do so, who they are. One good reason (and the only reason we would ever use) is to identify potential research participants. The custodians of the Register would then approach suitable registered participants to tell them about the work being undertaken and invite them to take part.
What happens if I change my name or address?
You don't have to do anything. Any change in these details that your GP practice knows about are reflected in your NHS records and picked up by SHARE, automatically.
Is SHARE part of the NHS?
Share is part of the Scottish National Health Service Research and NRS Scotland which is intended to improve the quality of healthcare research in Scotland by addressing problems of recruitment. It has the total support of Government and is part of NHS. Access to NHS computer records is carried out entirely within the NHS network protected by the law, strict operating procedures, human gatekeepers such as Data Protection Officers and software fences such as firewalls
What is National Health Research Scotland?
NHS Research Scotland (NRS) is a partnership involving Scottish NHS Boards and the Chief Scientist Office (CSO) of the Scottish Government. The overarching aim of NRS is to ensure that NHSScotland provides the best environment to support clinical research. This is achieved through the application of best practice and processes that can support efficient working, as well as providing the solid infrastructure that is need to support all research undertaken in the NHS for patient benefit. CSO provides NRS funding to the NHS to support this aim.
What is SHARE?
The Scottish Health Research Register (SHARE) project is a partnership between the NHS, government and universities in Scotland to develop a Scottish research register of people aged 16 or over and living in Scotland (i.e. with a Scottish postcode) who have said they are interested in helping with medical research.
What is the register?
The register is a list of people living in Scotland who are willing to provide secure access to their medical records through the NHS. By joining the register, individuals also give permission for SHARE to contact them to see if they might take part in research studies.
Why is it important to have a Register?
It is important to have a register because it will help match interested people to good quality research projects that are likely to suit them. This will greatly improve the time it takes to carry out research studies and to bring new treatments into routine use.
Why was the SHARE register set up?
SHARE was set up in 2012 to play a key part in helping improve Scotland's future health. At the moment, it is difficult for academics and those running clinical trials to identify those whose health profiles could inform ongoing studies. Those who register with SHARE allow secure access to their health records under tightly controlled, secure conditions.
Who else is involved in SHARE?
SHARE is a partnership organisation which includes Scotland's medical schools, with academic partners, and supportive charities, such as the British Heart Foundation, Diabetes UK, Chest Heart & Stroke Scotland, the Stroke Association, etc. SHARE is also supported by the Chief Scientist Office of the Scottish Government.
Why should I sign up to SHARE?
The aim of SHARE is to make it easier to carry out medical research in Scotland. Research is an essential part of the process of developing new treatments and cures for conditions including heart disease, diabetes and cancer. By joining SHARE you could be helping to improve the future health of all Scots - including you, your friends and family and all those you care about.
Do SHARE volunteers need to be unwell or have an existing health condition?
Certainly not. The aim is to build a cross-section of the whole population. SHARE will match those on the register with research projects according to their health profile and no-one can be too healthy or too unwell to be of interest.
How do health trials work?
Each one is unique and can vary from academic desk research to long term participation such as studies of child development over many years. Not all involve drug or medical intervention and may instead be more interested in lifestyle and environmental factors.
Which diseases are being researched?
Scotland has a first class record of medical research and this covers a huge range of ailments from what some might see as trivial to debilitating and life-limiting diseases such as cancer, diabetes, multiple sclerosis and motor neurone disease.

HOW does SHARE work?

What sort of research would the Register invite me to join?
You might be asked to take part in some studies as a 'healthy volunteer', possibly because of your age or your sex, or simply because you are conveniently located near the site of the research. In other cases you would be invited to take part in research studies because of a specific medical condition or because you are on a specific medication. For example if you suffer chronic pain, you might be asked to take part in a study exploring a new drug for managing this.
What currently happens with all our medical data?
Every day, NHS computers throughout the country routinely talk to each other, swapping and updating information about the health of the Scottish population. The information held on these computers deals with such things as hospital admissions, waiting times, GP visits and outpatient appointments. There are also several computer-based registers which hold details on people with specific illnesses: for example, cancer or diabetes. Usually, this information is used anonymously at the national or regional level to plan, deliver and monitor the health service. Your GP practice routinely stores your records on computer, coded to provide a shorthand summary of your state of health. NHS emergency workers can, with your permission, look at the Emergency Care Summary to get information about prescribed medicines and allergies. This is copied from your GP computer system and stored electronically. NHS staff can then find it quickly if they need to see it. Whatever the reason for checking your records, the security of all these communications is managed to the very highest level. Many searches can be done automatically by computer using the codes, so no person needs to look at individual records.

How do I join?

How do I join the SHARE register?
Volunteers can sign up on the internet (insert link) or fill in a form (download here) which can be returned by FREEPOST.
How long will it take to sign up?
The process should take about one minute. The only information we require is your name, date of birth and postcode, as this is all we need to accurately identify you within the existing NHS system of records.

What happens to me after I join?

What will happen if I join?
If you decide to join SHARE you are agreeing to allow us to use the coded data in your various computer records to check whether you might be suitable for research projects about health (for example we might be looking for people who have mild high blood pressure, but who are not being treated by drugs). If you are suitable we will contact you by letter, email or phone (whichever method you prefer) to let you know about relevant studies. Once you hear more about any study you will have the opportunity to decide whether to take part.
How often will you contact me about potential studies?
You can tell us how often you want to be approached, but the usual rate will probably be up to four times a year. Remember, joining the Register does not mean that you have to take part in research; only that you are willing to be approached, by us, about studies that might be suitable for you. Only if you are interested will a researcher be put in touch with you (and you can still say no to them).
Does this mean I will have to take part in a future health study?
Signing up to the Register involves no commitment to take part in trials. Should your health profile be found to match that of a research project in the future SHARE may contact you to tell you about it and invite you to take part. However, it is up to you to decide at that time if you wish to take part.
Do I have to take part in a study when invited?
No. As usual it is your choice whether or not to take part in any study that you might be invited to take part in. All the Register does is facilitate your being approached. After SHARE has contacted you to inform you of research which is of relevance to your health profile further participation is entirely your choice at that time, every time.
Could there be any risk to my health in taking part in a clinical trial?
Clinical trials and studies are highly regulated. Most investigate the effect or usefulness of a new or revised treatment. Some are explicitly set up as safety studies. In all cases, safety is paramount. Patients on trials are continuously monitored and studies would be modified or stopped if any risk was identified. The majority of studies use existing procedures and medicines and pose virtually no risk. If a treatment is novel and risk was less clear it would be clearly discussed with you before anything happened. You could of course choose not to proceed at any point.
Will I get paid if I take part in a trial?
Payment is a feature of a few trials. Others may offer travel and subsistence costs. The real benefit of the SHARE register however lies in each individual helping to find better ways to relieve or cure a wide range of medical ailments.
How will I be contacted?
You can opt at the outset to be contacted by mail, email or telephone and we will use your preferred means to reach you if a relevant study opportunity arises.
Am I going to be bombarded by information from SHARE?
Definitely not. You can elect to receive SHARE newsletters or not. And you can set limits on how often you want to be contacted about appropriate opportunities to as few as one per year if you wish. Opportunities are very unlikely to arise more than 2 or 3 times per year at most.
How can I find out more about the medical trials conducted through SHARE?
You can check into the news pages of our website (add link) at any time to see the latest research updates from within the SHARE community.

I'm worried about confidentiality

I'm worried about confidentiality
Your medical record will be held securely at all times, entirely as usual. All that will happen is that if a research team wish to contact suitable people, then NHS Register staff will carry out an automatic search through NHS electronic records such as GP computer records and blood test results that will identify you, check if you are someone that may meet the conditions that the researchers may be interested in (e.g. they may be interested in people who have high blood pressure or possibly healthy people who have never been in hospital), and also your preferred way of being contacted. Register staff will then make the first approach to tell you about what the project involves. If you are interested then with your permission we will let the researchers know. If not then, you are completely free to decline at this stage.
Will my taking part in a study be kept confidential?
Yes. All the strict laws of confidentiality will safeguard your privacy, as they do already. The fact that you are on the Register is also completely confidential, with all information and communication managed by the custodians.
Who will have access to my records?
Staff working with SHARE will have access to your health records but they will remain entirely confidential. Patient confidentiality is paramount within the NHS and at SHARE, we will supply details to researchers only if your health profile matches their study and only after you have given us permission to do so.
What safeguards do I have that my personal health records will remain confidential?
The NHS works under strict governance procedures. All searches have to be approved. In addition much of the basic analysis and selection is done anonymously so your name and address is only made available as the final step when we need to contact you. Even the act of addressing envelopes and posting letters is carried out according to the strictest possible rules and regulations.

How do I manage my membership?

How long will my name stay on the Register?
Your name will stay on the Register until and unless you request its removal. You can withdraw at any time.
What if my contact details change?
If you change your phone number, mobile number or email address you should let us know (but only if you have given us these details already).
How do I withdraw if I want to?
You have total control and can decline to respond to any invitation to take part in a health study at any time, without having to give any explanation whatsoever. You can also leave the register by calling the 24 hour answer phone service on 44 (0) 1382 383230 or 44 (0) 383471 or email us at enquiries@registerforshare.org and we will withdraw your details. It's simply a case of re-entering your details. We hope you won't however, since every individual's participation is valuable to meet our objective of improving Scotland's future health.
If I have already joined SHARE. Can I now provide consent for the study of my spare blood ?
Please register again, the web site should now offer you the spare blood option. Alternatively you can email the SHARE team at share@dundee.ac.uk or call us at 01382 383230.
What is the purpose of this part of the SHARE register?
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.
Why would you want my blood?
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.
Will you take blood from me for SHARE ?
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.
Who can take part in this part of the register?
The key to success in research is to be able to study as many people as possible, and therefore we are asking everyone in Grampian, Tayside and Fife over 16 to take part. This is regardless of current disease diagnoses or drugs prescribed.
Will blood I donate for transfusion be used for SHARE?
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.
Are there any possible disadvantages and risks of taking part?
As you dont have to do anything beyond completing the registration form, there is no extra discomfort, risk or side-effects.
What will happen to me if I take part?
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.
What are the possible benefits of taking part?
This type of research is complex and time consuming so we cant 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.
What kind of research will be done on the samples that I give?
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.
Will my taking part in this study be kept confidential?
All information which is collected about you during the course of the research will be kept strictly confidential.
What will happen to any samples I give?
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.
How long will the research last?
This register doesnt 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.
What if relevant new information becomes available?
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.
Do I need to declare this for Medical Insurance?
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.
What will happen if I don’t want to carry on with the register?
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.
What happens if I decide to withdraw AFTER my sample has been taken?
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
Will I be paid for taking part?
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.
Who is organising and funding the research?
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.
Who has reviewed the study?
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.

You may contact the SHARE team directly by telephoning 01382 383230 for further information at any time.

Email : SHARE@dundee.ac.uk

Alternatively, you may contact your GP for independent advice regarding this register.

If you believe you have been harmed in any way by taking part in this study you have the right to pursue a complaint and seek any resulting compensation through the University of Dundee, who are acting as research sponsor. Details of this are available from the research team. As a patient of the NHS, you have the right to pursue a complaint through the usual NHS process. To do so you can submit a written complaint to :

Complaints and Feedback Team Lead
Complaints and Advice Team
Level 9
Ninewells Hospital
Dundee
DD1 9SY

Freephone : 0800 027 5507
Email : complaints.tayside@nhs.net

Note that the NHS has no legal liability for non-negligent harm. However if you have been harmed, and this is due to someone’s negligence, you may have grounds for legal action against the NHS Tayside but you may have to pay your legal costs.

v2, 25/03/2013