Mix of people standing around

Why should I register?

The only way to improve health is through research. It might sound obvious, but research for a health condition can only take place with the help of people who have that condition.

Many people who have health problems are interested in taking part in research but don’t know how to find out what is going on.

At the same time, researchers are struggling to find people who want to take part in their studies. Research for the Future helps connect the two.

Taking part in any aspect of health research means you can help improve health care and treatments now and for future generations.

Joining Research for the Future

Joining Research for the Future is free. When you join, you will be asked for your contact details and some basic questions about your health condition.

Joining Research for the Future means you are agreeing to receive information from us about health research going on in your area. We never pass your details to researchers. Instead we contact you via your chosen method of communication and if you are interested in taking part in the study, we will put you in touch with the researcher.

This means it is always your decision whether you take part in any research we tell you about. Taking part is completely voluntary. You can withdraw from a study or from the Research for the Future campaign

at any time without it affecting your care.

You can register your details and join the campaign very easily online.

Alternatively you can text the word research and your name to 81400 and a member of our team will call you to complete your registration over the phone. (You will be charged your standard text rate.)

If you wish to write a letter to us instead, make sure you include your name and telephone.

We take data protection very seriously. All our records are kept in accordance with the Data Protection Act 1998. Your information is stored on our secure NHS database and access to it is strictly limited.

Which research studies can I take part in?

We have lots of different types of research for you to take part in, including: questionnaires, focus groups and trials of new treatments. When a study is available in your area, we will contact you to let you know where it is taking place, what would be involved and how you can take part. The research team will be able to provide you with more information and answer any of your questions.

It is always your decision whether you take part in any research you receive information about. Your care with your healthcare team will

never be affected by this decision.

Some research studies have very specific requirements, for example they may be looking for people with a particular medical history or who are taking certain medications. Other research opportunities such as focus groups may only need a few people. This means not everyone who volunteers for a study will be able to take part.

The research team will always inform your GP if you take part in any clinical research.

What happens after registration?

A member of the Research for the Future team will contact you by telephone within a few days of you registering. During this short call you will be asked about the types of research you are interested in and you will have opportunity to ask any questions you have about the campaign. Your registration is then complete. Research for the Future will usually contact you by post or email, depending on the information you gave us at registration.

Why do you want my NHS number?

Your NHS number is unique to you. It helps health care staff match you to your health record. You can find your NHS number on your prescription, medical card or your GP practice can provide you with it.

If your GP uses a system called FARSITE we can use your NHS number to safely and anonymously search your health record to see if you match the specific requirements of a clinical study. We will NEVER be able to see your actual health record.

You can still join Research for the Future if you do not give us your NHS number. This is because some studies, such as questionnaires and

 

focus groups, only require basic personal details, such as the ones you provided when you registered.

We would like to assure you that we take data protection extremely seriously. Everyone working for the NHS has a legal duty to keep information about you confidential. All the information you provide us with is held on a secure NHS database. Access to it is strictly limited.

If you are happy for us to hold your NHS number on our database and have not yet provided it you can find out how to do this by contacting us.