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What is SHARE about?

What is SHARE?
SHARE - The Scottish Health Research Register - is a register of adults and children aged 11 and over who are willing to be invited to take part in medical research projects and have also consented to allow researchers to use any left-over blood following routine clinical testing for approved research. Often people who want to be involved in medical research (whether they are unwell or not) don't know where to start or who to ask. Researchers have a similar problem; they want to do studies but sometimes cannot find people to take part in them. Getting involved in research studies can range from answering surveys, to having your blood tested, to testing new medical devices and phone apps, and sometimes even participating in clinical trials. With your help, we can help researchers understand diseases better, and find new ways to prevent or treat illnesses and therefore improve future care. SHARE is for both healthy people and those with medical conditions. When you register, you will also be invited to give permission for any spare blood left-over following routine clinical tests to be kept and used by researchers, for example, looking at the role of genes in diseases. The blood is stored carefully and only used for research that has been ethically approved and you will not be identified so the researchers won't know whose blood they are using.
Why is SHARE needed?
In order to develop new tests or treatments or ways to improve care, volunteers are needed to take part in research. People who are interested in research do not always know how to find out about it, or how they can get involved. It is also often difficult for researchers to find people who would be willing to take part in research. We want to make it easier for all people, both healthy and those who may have medical conditions, to become involved by making it easier for researchers to find people interested in participating in research studies and for people to make their interest known. SHARE allows individuals to register their interest directly.
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 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.
Who has approved the Register?
The East of Scotland Research Ethics Committee REC 2, which has responsibility for scrutinising all proposals for medical research on humans in Tayside, has examined the proposal and has raised no objections from the point of view of medical ethics. This approval covers all of Scotland.
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.
Is SHARE part of the NHS?

SHARE is an independent academic-led initiative intended to improve the quality of healthcare research in Scotland by addressing problems of recruitment. It has the total support of Government and the NHS. Access to NHS computer records is carried out entirely within the NHS network protected by the law, strict operating procedures, and human gatekeepers such as Data Protection Officers and software fences such as firewalls.

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?

How does the SHARE initiative work?
1. You complete the SHARE Registration. Your details will be kept secure within the NHS Systems at the Health Informatics Centre (HIC). 2. Researchers will approach SHARE with a prospective project, HIC will carry-out a coded data search to find anyone in SHARE who is eligible. This list of names will be sent to SHARE. 3. Only HIC and the SHARE team will be able to see your name and contact details, and they will contact you to explain what the research is about, and to answer questions you may have. 4. If you are interested, and only with your agreement, the SHARE team will pass your contact details to the researcher who will get in touch with you to discuss it further. 5. You decide if you want to take part. It is your choice and you can say no. There is no obligation to take part in any project. Financial incentives may be available for some studies and others will cover expenses. 6. SHARE won't be involved directly in any study you participate in. But we'll keep track of your participation in a study and when the study completes we may contact you about further studies.
Who is organising and funding SHARE?
The SHARE register is part of NHS Research Scotland and is organised and sponsored by NHS Tayside with funding from the Scottish Government Chief Scientist Office. The collection, storage and approved access of spare blood is organised and sponsored by the University of Dundee in collaboration with the Universities of Edinburgh, Aberdeen and Glasgow with funding from the Wellcome Trust and Pharmaceutical companies.
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.
How will my information be used?
Information about your health is stored in various NHS computer records so doctors and other health professionals have the information they need to look after you. When you register for SHARE, you are giving permission for HIC to search your NHS health information to see if your characteristics match those of people that researchers are looking for to participate in studies. This may include your genetic profile if you have given permission for your blood to be stored. For example, a search might be conducted to find people on the register who are over the age of 40 and have diabetes. The list will be used by the SHARE team to contact the individuals identified to check if they are interested in speaking to the researchers to learn more about getting involved with a particular study. Researchers will not be able to identify or contact you until you have given permission to the SHARE team for this to happen. Your full medical or genetic record will never be seen by SHARE or the research team, only the parts relevant to the study will be looked at. For example, you may have asthma and diabetes; but if the search was to find people with diabetes, it would not be revealed that you also have asthma. Some people approached by SHARE may not have the condition under exploration and are invited as a "control" participant. Your privacy is extremely important to the NHS and SHARE and your health information will only be used by SHARE in the way that you have given permission for when registering and in accordance with UK Data Protection Law.
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 at www.registerforshare.org.
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 (click here) 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 records 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 staff will carry out an automatic search through NHS electronic records that will identify you and 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). SHARE 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?
No one will see to your full health records when you register with SHARE. If you are on the SHARE register secure NHS computers perform coded searches on your records for example for a specific disorder or medication to identify individuals who may be suitable for a certain study.
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?
This register does not have a defined end date. We will keep you on the SHARE register indefinitely and if you have given permission for use of your blood this too may be kept indefinitely. However, you are free to end your involvement at any time. Just contact the SHARE Team.
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 be removed from the register by calling the 24 hour answer phone service on 01382 383230 / 01382 383471 or email us at enquiries@registerforshare.org and we will withdraw your details.

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 if I've given permission for my blood to be used for research?
Every time you give blood for a routine clinical test, a small amount is left in the tube. This left-over blood can be valuable for research but your permission is needed to keep and use any of this sample. If you have given permission for your spare blood to be collected, no further action is required on your part. You do not need to come to the hospital, and no additional blood samples will be needed. Only spare blood that remains in the NHS laboratory after you have had a test requested by your doctor will be stored. These samples will be stored carefully and coded (de-identified) so they cannot be directly traced back to you as the donor. The samples will only be used in research studies that have been ethically approved and any samples used in research will have all personal information removed so that they cannot be identified as you.
What kind of research will be done on the samples that I give?
Recent advances in early diagnosis and treatment of diseases have been in part due to understanding genes and how people\'s genetic code can influence disease and their responses to medications. This is an important growing area of research as the discovery of genetic variations can be used to develop new, more effective diagnostic tests, and drug treatments that can be better tailored to patients. Many people in Scotland have already been involved in genetic studies. 10% of the Scottish population has already volunteered for genetic studies into diabetes, obesity, cancer, heart disease, asthma, COPD, eczema or heart disease. SHARE is helping expand the valuable research being carried out in these and other disease areas. 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). In this way, information gathered may provide useful guidance for the development of new tests or treatments. You may be selected and invited for research studies based on your genetic information in the future. Your samples will also be used to study changes in molecules in your blood over time. For example, researchers might look at how molecules in the blood change during the course of a disease, or during treatments. Several samples may be retained over the course of your disease or particular treatment.
Why do you want my blood for research?
Using your blood researchers can look at, for example, the role of genes in health and disease or to develop new tests to spot disease earlier. By joining SHARE you are giving permission for your surplus blood to be accessed and securely stored. You are also giving permission for this material to be used for approved research studies that may include genetic analysis and information to be combined with your coded medical data. When your information is used in this way, your privacy is protected and personal details which identify you are removed (the information is 'de-identified'). For example, if researchers are looking for blood from asthma patients to study the genes involved in asthma then they will get samples (after approval) from these patients (with no identifiers) but with knowledge that the samples came from asthma patients.
Will you take blood from me for SHARE ?
It is only blood left-over from samples you may give in the future for testing when you visit your doctor or hospital that will be used. You are simply giving permission for researchers to use any of the left-over blood following routine clinical testing. No more blood will be taken than is usual for standard medical tests. You will not have to give extra samples.
What will happen to my blood sample?
Any blood collected will be carefully and securely stored indefinitely for future research. Multiple samples from you might be kept. These will be used when the original sample runs out, but they might also be used to look at changes in molecules in your blood over time. For example, researchers might look at how molecules in the blood change during the course of a disease, or during treatments. Samples of your blood may also be sent to other research groups, including outside the UK. As before, the sample will be de-identified so that you cannot be identified. The transfer of samples will be strictly controlled to ensure your privacy is protected and it is only used in ethically approved research studies, which could be funded by the public, charity or pharmaceutical sector organisations.
Who will look after my donated blood samples?
Blood samples that are collected will be looked after by special facilities within the NHS called human tissue biorepositories. There are four of these in Scotland and they all have been independently accredited to ensure that they follow best practice and relevant laws around the collection, storage and use of human tissue samples. They make sure that the blood samples are coded (de-identified), stored carefully and safely, and that they are only given to researchers for ethically approved research studies. More information about these biorepositories is at: https://www.nhsresearchscotland.org.uk/research-in-scotland/facilities/biorepositories-and-tissue-services
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 Scotland over 11 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 don\'t 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 benefits of taking part in SHARE?
SHARE is making it easier to carry out health research in Scotland. This research is essential to learn about people\'s health and find better ways to treat and prevent disease. The more people get involved in research the better the help research can be to improving the future health of the whole population. You can keep up to date with research taking place on the SHARE website and our e-newsletters.
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 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.

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 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
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.
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 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.