Moorfields Research and Innovation. Participating in research at Moorfields Eye Hospital NHS Foundation Trust. hope trust care

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1 Moorfields Research and Innovation Participating in research at Moorfields Eye Hospital NHS Foundation Trust hope trust care

2 take part

3 At Moorfields, we conduct clinical studies (including trials) with the aim of improving diagnosis and treatments for patients with eye conditions. Can you take part in a clinical study? As each clinical study has specific criteria for participation, Moorfields medical records are reviewed to find people who may meet those criteria so that we can contact them to find out if they would like to take part. If you are happy for your Moorfields health record to be reviewed now and in the future to find out if you match criteria for a clinical study, you do not need to do anything. We will contact you if there is a study that might be suitable so that we can discuss the details and see if you would like to participate. You can make your decision about participating at that point. You are never under any obligation to take part in a clinical study and you do not have to give us a reason if you do not want to take part. If you do not want your Moorfields health record to be reviewed for the purposes of possible participation in a clinical research study, you can let us know by calling You can do this now or at any time in the future. Further details are explained in this leaflet.

4 research 1 Why participate in clinical research? Research is carried out within the NHS to gain a better understanding of diseases, and to improve treatment options and care for people with acute or long-term health conditions. Clinical research can only be conducted if patients are willing to participate because it is only with the participation of patients that we can determine whether the new approaches being explored will be beneficial to patients. Volunteers who participate in clinical research can help to improve treatments for thousands of people. The best way to find eligible patients is for our researchers to review patient health records held at Moorfields. Clinical research can help to improve treatments for thousands of people.

5 2 How can you participate in clinical research? One of our biggest challenges is finding patients who meet the specific criteria of a clinical research study so that we can offer them the opportunity of participating. We take the approach that all patients being treated at Moorfields may want to take part in research. Only a small number of patients will ever fit the criteria for a specific study. For example, some studies may need to recruit patients whose vision is affected in a very particular area of the eye or who have a family history of genetic change. The best way to find eligible patients is through the review of patient health records held at Moorfields. 3 Are you happy for your Moorfields health record to be reviewed to find out if you meet the criteria to participate in a clinical study? As stated above, the best way for us to find people meeting the specific criteria for a clinical study is for a researcher to review your Moorfields health record. The researcher will only have access to an anonymised form of your health record, and they will not have access to records held by any other hospital. Everyone who works for the NHS has a legal duty to maintain the highest level of confidentiality. There are strict rules to ensure only authorised staff have access to personal information and that health records remain secure. New clinical research studies are developed every year so we shall continually review your health record through anonymous data searches in case you match criteria for new studies. To increase the chances of being able to match you to an appropriate clinical research study, we assume that you are happy for our researchers to review your health record at Moorfields. Even if you do meet the criteria for a study, you do not have to take part see section 4. If you do not want researchers to have access to your Moorfields health record and you do not want to be contacted about the possibility of participating in a clinical research study, you will need to opt out of the research system at Moorfields. You can decide to opt out at any point in the future. In summary, our research system assumes you have opted into the possibility of participating in research so if you want to opt out, please see section 6. participate

6 4 5 What will happen if your Moorfields health record indicates you may be eligible to participate in a clinical research study? If we find that you match the criteria for a clinical research study, we de-anonymise the data and pass it to a member of your clinical care team so that you can be contacted with information about the study and given time to consider whether you may want to take part. You can ask as many questions as you like about the study before you make a decision. You do not need to give a reason for not participating in clinical research. Even if you initially decide to join a study, you can withdraw at any time. Your NHS care will continue as usual if you decide not to take part. When might you be contacted about the possibility of participating in a clinical research study? You may be contacted at any time: next month, next year or in several years time (assuming you are still a Moorfields patient) if a research study begins for which you could be a match. You may receive a letter or telephone call outside of your appointment at Moorfields, or a member of staff may discuss a research study with you during one of your appointments at the hospital. Please note, however, that the criteria for clinical research studies are very specific, which means you may never be contacted. eligible

7 who? 6 If you do not want to participate in clinical research at Moorfields and/or do not want researchers to look at your Moorfields health record even in anonymised form, what do you do to opt out now or at any time in the future? You can opt out by calling and asking for your relevant Service, or writing to your relevant Service. If possible, please have your Moorfields hospital number available when you contact us to advise that you want to opt out of the possibility of participating in research at Moorfields and that you do not want your Moorfields health record to be reviewed for research purposes.

8 study 7 8 Who conducts research at Moorfields? Many of the healthcare professionals you meet at Moorfields are involved in conducting research, often as part of their daily job: consultant ophthalmic surgeons, doctors, nurses, technicians, administrators, optometrists, orthoptists to name a few. Sometimes, we obtain special funding to employ people full time for the duration of a specific research project. For many projects we work with our academic research partners, UCL Institute of Opthalmology, whose specialists dedicate their professional lives to exploring the causes of eye conditions and finding better ways of treating them. All are bound by the same legal duty to maintain confidentiality. Where is clinical research conducted at Moorfields? Most of our clinical research takes place at the Moorfields City Road site on the second floor of the main hospital (for adults) and on the second floor of the Moorfields Richard Desmond Children s Eye Centre (for children). Occasionally, clinical studies involve other Moorfields locations.

9 get involved

10 9 10 How is research funded at Moorfields? Our main funder at Moorfields is the National Institute for Health Research (NIHR) which awarded the partnership between Moorfields Eye Hospital and UCL Institute of Ophthalmology the status and funding of a Biomedical Research Centre (BRC). There are only 11 such prestigious BRC partnerships in England. Our BRC is dedicated to eye research. We also received an award from the NIHR for a Clinical Research Facility (CRF) and this is where most of our clinical research takes place (on the second floor of Moorfields at City Road). In addition, specific clinical research projects are funded through NIHR competitive funding schemes, charitable grants, Research Council grants or industry funding. How else can you get involved in research? There are other ways in which patients and the public can become involved in research apart from participating in clinical studies. Our NIHR Moorfields Biomedical Research Centre encourages and facilitates informal discussions between researchers and patients, which explore the way in which research is conducted and what it focuses on to ensure we are meeting the needs of our patients. More information is available on our website,

11

12 NIHR Biomedical Research Centre Moorfields Eye Hospital NHS Foundation Trust 162 City Road, London EC1V 2PD Tel: Published by Moorfields Research & Development March 2015, Moorfields Eye Hospital NHS Foundation Trust

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