Questions (Accessibility)

• 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. 

• 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.

• 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. 

• 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. 

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

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

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

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

• 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. 

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

• 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. 

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. 

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

• 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. 

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

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

• 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. 

• 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.

• 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. 

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

• 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. 

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

• 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].

• Anyone aged 11 years and over.

• 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. 

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

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

• 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. 

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

• 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.  

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

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.

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?