Further information about Research+Me
Perhaps you have heard about Research+Me and are interested in joining, but you would like to understand a bit more about it. You have come to the right place! Consult our frequently asked questions (FAQs) below.
Why is Research+Me important?
Research+Me is a digital registry of people who are interested in taking part in research. It allows research teams to easily contact people who want to participate. We call it a “consent-for-contact” registry.
In the past, clinical trials have recruited participants mainly through specialist hospital clinics. Our aim is to make it as easy as possible for people throughout the community to take part in research. Research trials are vital if we are going to develop new and better treatments. A consent-for-contact registry is one of the most effective ways to recruit to clinical trials.
Who can join?
Anyone aged 18 or over can register to be involved. Some trials are for healthy volunteers and others are for people with specific medical conditions. The trials we recruit to are usually “late phase” clinical trials. This means that the treatments have already undergone safety testing and are now being used in larger numbers of volunteers.
What happens when I join?
By joining the registry, you are giving us permission to contact you about any research that you may wish to volunteer for. You are not agreeing to take part in any trials at this point, just to hear about any that may be relevant to you.
We will keep your data securely and we will never pass it to a third party without your explicit consent. We will keep your details for an indefinite period of time. Read our privacy policy to find out how we use your data. If you are contacted about a trial, it will be by NHS staff employed by The Newcastle upon Tyne Hospitals NHS Foundation Trust. You do not have to reply to the contact and can withdraw from the registry at any point.
We will only inform you about trials which might be relevant to you. This means that you may not hear from us for some time, maybe even years. To keep you informed of our activities, we would like to send you a quarterly newsletter. You can unsubscribe from this at any time.
How will I be invited to participate in a trial?
We send invitations to anybody who may be suitable based on the limited information we keep about you. We attach a “Patient Information Sheet”, which explains the trial in detail. Receiving and responding to an invitation does not mean you are eligible to participate, nor that you are committing yourself. It is just a first step.
Clinical trials have very specific criteria to determine who can take part and these vary considerably. Before we invite you to meet the researchers, we will ask you to complete a survey to assess your eligibility. This survey is called a “pre-screener”.
What is a pre-screener?
This is a short survey that asks a few extra questions to see if you are likely to be eligible to take part in a particular trial. It usually takes between 5 to 10 minutes to complete.
When you sign up to the registry, we collect just enough information to help us decide who might be a match for each trial. If we think a trial may be relevant to you, we will ask you to complete a pre-screener to find out more about you.
After completing this survey, the system will automatically tell you whether you may be eligible for the trial (in which case you will receive contact details for the research team), or if you are ineligible. By completing a pre-screener, you are not yet agreeing to take part in the trial. The pre-screener tells you if you are likely to meet the trial eligibility criteria.
What happens after the pre-screener survey?
After completing the online pre-screener, you will receive an email explaining whether you might be eligible. These are automated emails based on the answers you have provided.
If you might be eligible, you will receive contact details for the research team and an invitation to arrange an appointment. This is a good time to read the Patient Information Sheet and ensure you have a good understanding of the trial. Feel free to share and discuss with friends and family if this is important to you.
It is important to understand that you are not agreeing to participate in the trial at this point, nor is it guaranteed that you are eligible to participate. Some of the criteria to participate may depend on clinical test results or other factors that we can’t assess via a questionnaire.
The Newcastle Hospitals research team may also contact you to ask if you have any further questions or to offer you an appointment to come and discuss the research in more detail.
Occasionally, the Research+Me registry may be used to support research outside Newcastle. If the research team closest to you is in another NHS Trust, we do not normally pass on your information. However, if there is a reason to do so, we will ask for your specific consent. We will also have written agreements with the organisation receiving your data about how they keep your information safe.
What happens if I am not eligible?
You will receive an email saying you are not eligible to take part in this trial. This does not mean you will not be eligible for future trials, nor does it have any implications for your condition or current treatment. You should feel free to respond to future trial invitations.
We often invite many hundreds of individuals to take part in any particular trial, so unfortunately we cannot currently personalise these responses by explaining what it was that made you ineligible. We may be able to refine the system in the future to allow us to do this.
Who is running the registry?
The Research+Me registry team is based at the NIHR Patient Recruitment Centre: Newcastle, the UK’s first clinical trials facility in the NHS to specialise in late phase commercial trials. It is a stand-alone facility at the Campus for Ageing and Vitality Newcastle. We are part of The Newcastle upon Tyne Hospitals NHS Foundation Trust.
How do I withdraw from the registry?
You can withdraw your consent for this registry at any time. This does not mean you can’t participate in current or future research studies (which you might hear about through other means, such as from your doctor). However, once we have deleted your records, we will no longer be able to contact you about future research studies. To withdraw, please contact us at [email protected].