EPIC-Norfolk: Newsletters and Frequently Asked Questions (FAQs)

Newsletters

I am an EPIC participant, but I have not heard from EPIC for a number of years. Why was I not invited to a particular health check?
We approach participants by GP practice. The length of the health checks varies depending on the tests included in each phase and the ability of individuals completing the tasks asked of them. We aim to invite the maximum number of participants to each health check within the funded timeframe, but unfortunately this means that we are unable to invite every participant to each and every health check. When planning each health check we do prioritise inviting those participants who may have been missed during the previous health check.

How does EPIC-Norfolk follow-up on participants?
The great value of the EPIC-Norfolk study is in understanding what happens to the health of participants over many years as they age, and to get as complete a picture as possible of health in the community. Aside from previous health checks and questionnaires, we will continue to monitor the health of our participants through an ongoing record linkage to general and hospital medical records and disease registries, to get a picture of patterns of health and disease over the years. Therefore, even if participants have not attended a health check or completed a questionnaire, their earlier contributions continue to be of benefit.

I made the decision to 'opt-out' of providing data to third parties via my GP practice. Will this affect the information received by EPIC?
You have the right to request that your data is not used beyond your own care and treatment. If you have indicated to your GP that you do not want your data to be used by third parties, but do not wish this decision to affect the updates EPIC receives regarding your health information, then please contact us. This will ensure that you will continue to contribute to the study, even if you are no longer attending the health checks. With your permission, we can make sure that the information you have given to us over the years can still be used.

I am an EPIC participant but I have moved out of the Norfolk area. Can I still participate in future research?
You are very welcome to take part in future EPIC-Norfolk research activities from your new address. If you are planning to move location in the future, please let us know your new contact details via our Freephone number 0800 616911.

I have either been unable to attend the latest health check, or I have turned down the opportunity to attend. Am I still a participant on the EPIC-Norfolk study?
If you have been unable to attend a previous health check, you are nonetheless still classed as an active member of our study and would be approached in the future. Should you no longer wish to be involved in future EPIC research activities, then please contact us via our Freephone number 0800 616911.

I now have an illness or health concerns, can I still continue to take part in EPIC?
Yes. Any information with regards to your health is extremely important to the study. Even if you have been unable to attend a health check or fill in a questionnaire, the information we are provided with from hospital records and disease registries is still very important.

Am I too old to participate?
There is no upper age limit to participate in any part of the EPIC study. We wish to follow-up our participants for as long as possible and it is an important part of our research that we are able to collect information as people age.

I withdrew from EPIC at some point in the past but I am now interested in participating again, can I?
Yes indeed. Let us know via our Freephone number 0800 616911 and we will be happy to re-enrol you, making you eligible for any future EPIC related activities moving forward.
I no longer wish to receive information regarding future EPIC research activities and questionnaires. How do I stop communications being sent to me from EPIC?
Please ring us on our Freephone number 0800 616911, and we will take your name off the mailing list. Your participation in EPIC is completely voluntary and you can stop your participation in research activities at any point in time. Once your name is removed from the mailing list you won't hear from us at all. Deciding not take part in EPIC-Norfolk does not affect the treatment you receive as part of the routine care provided by your GP.

What results have EPIC come up with over the years?
We have published many papers over the years. For a full list of our publications, please see the Publications page on our website.

For general information on results, please also see the Summary Findings section on the website.

Changes to the management of EPIC-Norfolk from January 2019, how will my previously collected data be handed?

Professor Kay-Tee Khaw who has up until now secured the grant funding for EPIC-Norfolk will be retiring by the end of the year and the EPIC-Norfolk study will transfer to the MRC-Epidemiology Unit, University of Cambridge from January 2019 onwards.

The study will continue under Professor Nick Wareham who is the other Principal Investigator for the study and Director of the MRC-Epidemiology Unit. The MRC-Epidemiology Unit is a department within the University of Cambridge and as such, none of the data that you have so generously given to us, will leave the University of Cambridge. The governance and security of your data will remain the same as it has always been.

The MRC-Epidemiology Unit will continue to use any previously collected data to conduct research analysis into the impact of diet, lifestyle and genetic factors on the onset of disease. In future, you may also receive communication from the MRC-Epidemiology Unit regarding any upcoming research activities.