Frequently Asked Questions

This site aims to use the best plain English summaries available.

A short clear summary is available on Be Part of Research, but it is sometimes more useful to provide a link to a summary on a different website.

It may take several months before the results of a study are available, even after a study has finished collecting data. If you've taken part in a study, you can ask the study team how you can find out the results.

For studies listed on Be Part of Research, we will try to update the information on our site with any publications, but you can also go back to the initial sources, ClinicalTrials.gov or ISRCTN.com where the publications may be listed.  

Any studies which were funded by NIHR should publish their results on the NIHR journals library.

It is a legal requirement for research studies to have specific approval to enrol people who lack capacity. If a study has this approval, then someone acting under a Lasting Power of Attorney for Health and Welfare can volunteer a person who lacks capacity for research as long as the decision is made in accordance with the person's best interests. Read more information about consenting to a study.

Patients sometimes ask why a treatment, drug or device that seems to work in a research study is not always made available on the NHS once it ends.

There are a number of decisions that are made, including whether a medicine or device is licensed for use and made available in this country. 

An independent public body, the National Institute for Health and Care Excellence (NICE), makes decisions about whether the NHS should buy new or existing treatments. It makes these decisions based not only on how well a treatment works, but also on whether it represents value for money. Sometimes, treatment costs only become entirely clear after a study ends.

Until a study is complete and analysed, such things are unknown. This is why it is impossible to know whether the treatment will be made available on the NHS following the drug trial or research study.  Here's how patients can get involved with NICE's work.

In order to contain as many high quality study records as possible, we use data from multiple registries and databases. If the study is listed on both of these registries you will see them more than once in the search results. To help, the study title is likely to be the same or similar. 

If you have plans to take a holiday, do discuss this with the research team before enrolling in a study. It might impact on your availability for appointments and follow up visits or tests.

Travel insurance

Taking part in a research study should not affect your insurance cover, providing the medical condition in question doesn’t.

This guidance from the Association of British Insurers (PDF) states ‘When individuals apply for travel insurance, insurers will typically ask questions about an individual’s health in order to make an accurate risk assessment. This risk assessment takes into consideration the health of the individual and the insurer will often ask questions about pre-existing health conditions and medical treatments for those conditions.'

Travel insurers do not typically ask about research. Where an insurer does ask an individual about their participation in research, the insurer must ensure the question is clear and the individual should answer accurately and honestly.

Insurers are interested in the health of an individual, not their participation in research.

Most research studies rely on volunteers to participate.  You may be reimbursed your travel expenses so it's worth talking to the study team about what financial reimbursements are available.

For general questions or comments, please complete our contact form or email bepartofresearch@nihr.ac.uk

Your suggestions about how we can improve this resource are always welcome.