Infomation about research

What are clinical trails?

Does a treatment work?

A clinical trial looks at whether or not a particular treatment is effective at treating a condition

Does it work better than other treatments?

The treatment being looked at in the trial will be compared against the current best treatment to see if it works better.

Does it have side effects?

All possible side effects encountered by patients during the trial will be noted and this information will then be used to help write the patient information leaflets included in boxes of medication if the treatment goes for sale.

Other types of research

Not all clinical trials involve drugs or treatments. They may also look at the care you receive. They could also involve:

  • Interviews
  • Questionnaires
  • Researchers observing interactions with your care team
  • Advising a research team
  • Participating as a healthy volunteer
  • Taking a blood or tissue sample

Benefits

  • Clinical trials aim to improve the health and quality of life for patients and the population.
  • Without clinical trials there is a risk that treatments do not work or could be harmful to patients,
  • You can learn more information about your condition and how to manage it,
  • The NHS can get access to new treatments that are only available through a trial,
  • You can help support medical science and increase our knowledge of conditions and treatments,

Additional information

  • All research studies are reviewed and approved before they begin, including by an Ethics Committee.
  • Full details of a study and what this means for you will be provided to you before you agree to be a participant, with time allowed to consider the study and ask questions.
  • All participation is voluntary. You can withdraw from a study at any time without this effecting the care you receive.

General Data Protection Regulation & Research

All NHS organisations are expected to participate and support health and care research. We have robust methods to protect your privacy, comply with the law and ethical standards, and to ensure that the research uses of your data are in the public interest.

When you agree to take part in a research study, we will collect the minimum personally-identifiable information needed for the purposes of the research project. Your personal data will be used in the ways needed to conduct and analyse the research study. Depending on the needs of the study, the information that is passed to the research sponsor may include personal data. You can find out more about the use of your use your data for the study you are taking part in from the research team or the study sponsor. We will also keep a copy of the information collected from you. You can find out who the study sponsor is from the information you were given when you agreed to take part in the study [add link to webpage with details of studies and sponsors]. Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, the sponsor will keep the information about you that it has already obtained. We may keep personal data from research indefinitely.

If you agree to take part in a research study elsewhere, we may provide them with personal data from your medical records. You will be told about this when you agree to take part in the study.

On rare occasions we may provide researchers with personal data from your medical records that could identify you, when we are not able to seek your agreement to take part in the study, for example because the number of patients involved is too large or we no longer have your contact details. We must have approval from the Confidentiality Advisory Group at the Health Research Authority before we can do this.

We may also provide other researchers with information from your medical records that does not identify you. This research may be exploring prevention, diagnosis and treatment of disease, which includes health and social factors in any disease area. Your personal data may be linked to data from other places such as central NHS records, or information about you collected by other organisations. These researchers may be from companies developing new medicines or medical devices, other NHS organisations, universities or medical research charities.

You may have agreed to be contacted about research studies that you could take part in when you were registered as a patient here or were previously treated here. If you have agreed to this, members of our research teams  may look at your medical records to see if you are eligible to take part in new research studies. You can ask for this to be stopped at any time. If you want to be included in this option please contact research@cumbria.nhs.uk

 

More information can be found on the National Institute of Health Research (NIHR)