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Questions (Accessibility)

Questions (Accessibility)

What is SHARE?

  • Share is a register for people living in Scotland who would be interested in hearing about medical research.  
  • Any time you have a blood test, any left in the tube can be useful for research. 
  • You need to give permission for this by ticking the box on the registration form. 
What is SHARE?

What do you mean by "research register"?

  • A register has names and details of people willing to be contacted for research.
  • If a project which if relevant for you is started, SHARE will contact you and ask if you are interested. 
  • There is no obligation for you to take part. You can always say no thank you. 

Why is SHARE needed?

  • All new medicines are made by doing research. 
  • To make new tests, medicines, vaccines, researchers need people to help. 
  • People do not always know how to get in touch with researchers. 
  • The SHARE Register was set up in 2012, to help improve Scotland's future health. SHARE allows researchers to contact volunteers, and you the volunteers can get in touch with researchers. 
Why is SHARE needed?

What about my data? What data do you use?

  • SHARE uses your health data to see if you might be suitable for a study.  
  • If you have something like “asthma” for example. This condition has a medical code which is J45. 
  • If a study is being done which requires people with “asthma” then the computers will find everyone with code J45 in their medical records and let us have a list. 
  • SHARE will contact you, explain what is happening in the study and ask if you are interested in speaking to the researchers.

How do health trials work?

Research studies can range from: 

  • Answering surveys. 
  • To having your blood tested.
  • Testing new medical devices and phone apps.
  • Sometimes participating in studies (not all involve medicines).
How do health trials work?

Why do you want my blood for research?

  • Genetic research using your blood lets us know how medicines work. 
  • It also helps researchers understand why some people don’t respond to medicines while others get better. 

What if I've given permission for my blood to be used for research?

  • No further action required!  
  • Any blood leftover in the tube when you have a blood test will automatically be anonymised and stored to be used in research.
What if I've given permission for my blood to be used for research?

What will happen to my blood sample?

  • The sample will be labelled with a barcode so no one can see any identifiable information. 
  • This anonymised sample is then stored in the freezer to be used when a project approved by ethics makes a request for it. 
  • No one knows who the blood is from.  
  • They only know the age, disease and if the person is male or female. 

Is SHARE part of the NHS?

  • Yes, SHARE is part of NHS Research Scotland and is funded by the Chief Scientist Office, Scottish Government.

What is National Health Research Scotland?

 What is National Health Research Scotland?

Who else is involved in SHARE?

  • Scottish Universities and Medical Schools.
  • Chief Scientist Office, Scottish Government.
  • Supporting charities.

Who has approved the Register?

  • SHARE has been approved by South East Scotland Research Committee which covers all of Scotland. 

Who is organising and funding SHARE?

  • NHS Tayside 
  • Scottish Government Chief Scientist Office 
  • University of Dundee in collaboration with Universities of Edinburgh, Aberdeen and Glasgow 
  • The Wellcome Trust 

Why should I sign up to SHARE?

  • To help in medical research and make a difference to the future health of Scotland. 
  • This will help with the development of new medicines and treatments. 

Could there be any risk to my health in taking part in a clinical trial?

  • Your safety is paramount. Any even remote risk will be discussed clearly beforehand and you have the right to withdraw at any time.

How does SHARE work?

  • You can join the SHARE Register online, or by completing a leaflet. You can also call us on 01382 384282 / 01382 383471. 
  • Researchers contact SHARE to ask for people suitable for their project. 
  • SHARE will ask the NHS to search the database and find those who are suitable within the SHARE database.
  • SHARE will then contact you; we will explain what the study is about and ask if you would like to speak to the researchers. 
  • Only if you agree, we will then pass your details on.  
  • You do not have to do anything and can stop at any time. There is no obligation. 
  • This way we connect you with research, and researchers connect with you. 

What sort of research would the Register invite me to join?

You may be invited for:  

  • A general survey, we have had a few around the impact of COVID recently. 
  • A study looking specifically at a condition you may have. This could include a new treatment or may be a new device (like an inhaler).
  • A study where they want to ask questions on a medication you are taking. 
  • You may be invited to help write guidelines for the NHS as to how your particular condition is managed. 
  • Or you may simply be invited because of the area you live in and they need your opinion. 

What kind of research will be done on the samples that I give permission for?

  • Your sample can be used to study responses to medicines.
  • Alternatively it can be used for genetic research which tells us why some medicines work better in some people but cause side effects in other people for example. 
  • Genetic research helps us to make new medicines and vaccines. 
What kind of research will be done on the samples that I give permission for?

Which diseases are being researched?

  • A wide variety of diseases. Please refer to current studies section website or call us to discuss.

Will you take blood from me?

  • At present, the project is only using blood which is normally thrown away after all tests are done. 
  • No extra blood is taken for SHARE. 

Will the blood I donate for transfusion be used for SHARE?

  • No, SHARE is not able to access any blood from Blood Transfusion.

Are there any possible disadvantages or risks of taking part?

  • There are no risks or disadvantages in joining to be part of the SHARE Register and Biobank.

What will happen to me if I take part?

  • You will only be contacted if there is a suitable study. 
  • There is no obligation to take part. 
  • The leftover blood will be collected automatically next time you have a blood test at your GP or a hospital clinic. 
  • Your sample will be stored with a code and will not have any information on it to say it is yours. 

What currently happens with all our medical data?

  • Your health records are held in the secure NHS. The data is in hospital safe havens and with GP’s.  
  • No one can just see your records. 
  • For SHARE studies we ask for people specifically for that study. For example, if we are looking for people with Asthma, we will ask the NHS to find anyone with the code J45 which is for asthma.  
  • SHARE will then get a list of names to contact and ask if they are interested.

How will my information be used?

  • SHARE contacts the NHS to find people suitable for a study. Your health records are accessed by the NHS to search for particular codes to see if you are suitable. 
  • No one has access to your complete health records and information. 
  • SHARE will never hand over your contact details to any researchers without your permission. 

Who will look after my donated blood samples?

  • All samples are registered with the Scottish Tissue Biorepositories and looked after by special facilities in Universities and the NHS.

What happens when new information is found from this research?

  • Researchers using your blood samples will produce reports and publications of what they find out. 
  • This information could point to a better understanding of how diseases develop or find new ways to treat illnesses. 
  • But, because researchers do not know the name of the person whose blood they are researching, they are not able to give any individual feedback. 
  • SHARE will not provide information to you about your individual results. 
  • However, results from the research you take part in, may benefit other people who are affected by different diseases.
  • Publications resulting from SHARE involvement will also be published on the SHARE website (www.registerforshare.org/publications). 
What happens when new information is found from this research?

Will I get paid if I take part in a trial?

  • This is different for each project.  
  • Some studies pay for taking part.
  • Some studies pay for transport and parking.
  • Some studies arrange transport for you. 

How do I join the SHARE register?

  • You can join the SHARE Register online, or by completing a leaflet. You can also call us on 01382 384282 / 01382 383471.

If I have already joined SHARE, can I now provide consent for the study of my spare blood?

  • Yes, you can. Please contact us by phone or email and we can add the information to your registration details. 
  • Phone 01382 384282 / 01382 383471. 
  • Email: [email protected].

Who can take part in this part of the register?

  • Anyone aged 11 years and over.

Do SHARE volunteers need to be unwell or have an existing health condition?

  • No, anyone can sign up to share if you are aged 11 or over. 
  • SHARE is for both healthy people and those with medical conditions. 

What will happen to me if I join?

  • You will only be contacted if there is a suitable study. 
  • There is no obligation to take part. 

Does this mean I will have to take part in a future health study?

  • NO. It is always up to you to decide if you wish to take part or not.

How often will you contact me about potential studies?

  • A maximum of 4 times a year but you can indicate a lesser number if you wish. 
  • You may not be contacted at all if a suitable project does not come in. 
  • You may be contacted by phone, email or by post. 
  • SHARE will contact you, and the team member will always identify themselves first and ask if you are happy to chat. 

How can I find out more about the studies conducted through SHARE?

  • You can check into the Studies page of our website at any time to see the latest research updates from within the SHARE community.

Do I need to declare my involvement for Medical Insurance?

  • No, insurance companies do not need to be informed. 
  • You are part of a research database and any leftover blood (if collected) will be used anonymously for research and is not a medical test.  
Do I need to declare my involvement for Medical Insurance?

I'm worried about confidentiality

  • The SHARE database only holds your contact details. 
  • This database is held in the secure NHS server and can only be accessed by secure passwords and identity. 
  • Your taking part in any study is kept completely confidential. 
  • Only the secure NHS personnel can access your records - no one else.  

What safeguards do I have that my personal health records will remain confidential?

  • The NHS and their data safe havens work under strict governance procedures with regard to patient confidentiality so all searches must be approved, and all analysis is done anonymously. 
  • Your personal records are always confidential. 
What safeguards do I have that my personal health records will remain confidential?

How long will I be registered for?

  • The register does not have an end date. 
  • You will be registered indefinitely, unless you withdraw. 

What happens if I change my name or address?

  • If you move home your GP needs to be informed. The changes will filter to your records and you don’t need to tell us. 
  • If you change your phone number and or email, please contact us by phone 01382 383471 or by email [email protected].
What happens if I change my name or address?

What if I change my mind after registration?

Just contact us and let us know what you would like to withdraw from:  

  1. Do you want to stop receiving our newsletters? 
  2. Would you like to be withdrawn from contact for studies which may be relevant for your particular condition? 
  3. Would you like to be completely removed from the database and if there is a stored sample for you this should be destroyed. 

If you prefer to withdraw online, please click here.

What happens if I decide to withdraw AFTER my sample has been taken?

As above, you can withdraw from the Register and Biobank at any time. 
Contact us and let us know what you would like to withdraw from: 

  • Do you want to stop receiving our newsletters? 
  • Would you like to be withdrawn from contact for studies which may be relevant for your particular condition? 
  • Would you like to be completely removed from the database and if there is a stored sample for you this should be destroyed? 

What if I have a complaint?

Please get in touch with the SHARE Team at [email protected].
Alternatively, you may contact the Complaints and Feedback Team:  
Ninewells Hospital, Dundee, DD1 9SY.  Tel. 0800 027 5507. Email: [email protected] 
 
If you have any questions that cannot be answered from the above information, please get in touch with the SHARE Team: [email protected].
 

What if I have a complaint?

It only takes a minute to join. Together we can make a difference to Scotland's future health.

It only takes a minute to join. Together we can make a difference to Scotland's future health.