We are looking for volunteers aged 18 years and over to join the NHS Newcastle Hospitals ResearchPlusMe Registry
Now registering volunteers for:
- Type 2 diabetes
- Irritable bowel syndrome
- Heart disease
- Depression and bipolar disorder
- Healthy volunteers
- We welcome volunteers with any health condition as new trials are taken on all the time
Why is Research+Me important?
Research+Me is a digital registry of people who might be interested in taking part in research. It allows research teams to easily contact those individuals who want to participate. We call it a consent-for-contact registry.
In the past, access to clinical trials has been largely through specialist hospital clinics. Our aim is to empower people from the wider community to take part in trials and thereby access the latest treatments and technologies. 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 of enabling recruitment to 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 provided have already undergone safety testing.
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.
Your data will be kept securely and will never be passed to a third party without your explicit consent. We will keep your details for an indefinite period of time. Click here 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?
Invitations are sent to those individuals that may be suitable based on the limited information we keep. A “Patient Information Sheet” will be attached which explains the trial in detail. Receiving an invitation and responding to it 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 which individuals should enter a trial and these vary considerably between trials. So, before we invite you to meet the research team we will ask you to complete a short survey (pre-screener) to assess your likely eligibility.
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 5-10 minutes to complete.
When you sign up to the registry, we collect only 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 make sure you are eligible to take part. After completing this survey, you will be automatically informed whether you may be eligible for the trial (and given contact details for the research team), or if you are ineligible. By completing a pre-screener you are not agreeing to take part in the trial, just to find out if there is a reasonable chance that you meet the trial eligibility criteria.
What happens after the Pre-screener Survey?
After completing the online pre-screener you should receive an email explaining whether you might be eligible or not. These are automated emails based on the answers you have provided.
If you are possibly eligible you will be given contact details for the research team 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 as some of the criteria for entry to the trial may depend on clinical test results or other factors not easily assessed in a simple questionnaire.
If the research team is part of Newcastle Hospitals NHS Trust, we are able to pass on your details to the research team who may contact you. 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 (ie not Newcastle), we would not normally pass on your information; but if there is a reason to do so we will ask for your specific consent to do so (and will also have written agreements with the organization receiving your data about how they keep your data 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 illness or current treatment. You should feel free to respond to future trial invitations. There might be many hundreds of individuals invited to any particular trial so it is not possible to 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 this to be done.
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 & Vitality Newcastle. Find out more about the Patient Recruitment Centre.
How do I withdraw from the registry?
You can withdraw your consent for this registry at any time and 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 own 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 nuth.registryP3@nhs.net