Section 1: MyMelanoma Overview
Scope and Purpose
MyMelanoma is a project designed to build a Research Database from data about a large number (or cohort) of people who have had a melanoma to help answer some of the most important and currently most difficult to answer questions about melanoma.
This project will run in three phases. When we use the word melanoma we mean specifically melanoma of the skin or rare subtypes of melanoma which arise in the mouth, inside the nose or sinuses, under nails, on the sole of the foot, on the palms or the genitalia.
We will not yet include melanoma in the eye because these melanomas behave very differently to melanomas that grow on skin or mucous membranes (lining of the mouth, nose, orifices, etc), but this will be considered later as a possible option.
What is different about the MyMelanoma Project?
MyMelanoma is about patients and medical teams around the world working side-by-side to answer the difficult-to-answer questions.
The study’s name, “MyMelanoma” reflects the fact that two people, Imogen Cheese and Sean Guinness, approached us wanting to “make a tangible difference” for melanoma patients. They wanted to help create both an environment where melanoma patients could play a significant role in determining what the important questions are that need answering and the mechanism whereby patients could more easily help provide answers to those questions.
The MyMelanoma philosophy is that by using the internet to collect data from very many patients and linking that data with information collected as part of those patients’ clinical care, we can create a data resource that will foster international efforts to work together to make things better for melanoma patients sooner than would otherwise be possible.
MyMelanoma will therefore build an “accessible resource”, whereby all the information donated by participants in MyMelanoma will be made available to melanoma researchers anywhere in the world so that progress can be made as quickly as possible. In this respect (and in other ways) the MyMelanoma Cohort is modelled on the UK Biobank which is being used to generate major progress in research into a wide range of health issues including COVID. See Section 3 below to learn how we safeguard any information you provide.
The Three Phases of the MyMelanoma Project
The three phases are structured as follows:
- Phase 1: We will invite melanoma patients with a strong family history of melanoma or any people who have had a clinical genetics gene test and therefore know they have inherited high-risk genes (gene carriers) which increase their risk of melanoma. The purpose of the project is mainly to find out what the risk of melanoma is for a gene carrier and whether carriers of high-risk genes are at risk of any other cancers besides melanoma. Melanoma patients with a family history are quite rare so we expect small numbers of people joining MyMelanoma during this phase.
- Phase 2: We will invite any patient within the UK who has been treated or is being treated for melanoma by the NHS. In this phase, no new blood or stool samples will be collected. Participants will be asked if the researchers can carry out research on samples of their melanoma stored in NHS laboratories.
- Phase 3: We will continue to recruit participants who have/have had melanoma, but we may also ask them to give blood and stool samples depending on whether they are having active treatment for melanoma at the time of their recruitment or not.
What are the Questions MyMelanoma Aims to Answer?
Ultimately, the MyMelanoma aim is to collect data from at least 20,000 melanoma patients to enable researchers to answer what we and our patients see as the most important questions for melanoma patients and essentially the questions we see as crucial now are:
Which patients are more likely to have a relapse?
Most people who have had a primary melanoma removed never relapse (have any further secondary melanomas) and we use something called the AJCC staging system to predict relapse. Whilst the AJCC gives a good estimate of risk, so far, the estimate is not as good as we would like. MyMelanoma will collect information and samples to allow researchers to develop tests to improve estimates of risk.
What lifestyles reduce or increase the risk of relapse?
We need to be able to provide more detailed advice to melanoma patients about how they could live most healthily after a melanoma diagnosis. So, MyMelanoma will collect information such as that on diet, exercise, alcohol intake from people who have had melanoma to enable researchers to identify factors which make a difference to melanoma patients’ long term health.
How can we better predict the benefit from therapy, so that patients can be offered the best treatment for them (personalised medicine)?
We need to be able to better predict who will benefit from immunotherapy and who will not and researchers are likely to do that by making tests of the melanoma itself, blood or stool (faeces) and this is the reason that we may ask you to provide some of those samples.
Which patients on immunotherapy will develop life-changing side effects and how can we best manage the side effects to minimise long term consequences?
In order to do this researchers need data on health generally of patients starting immunotherapy and again they are likely to do that by making tests of the melanoma itself, blood or stool/faeces and this is the reason that we may ask you to provide some of those samples.
What impact of having melanoma at any stage of diagnosis or treatment have, on the quality of life for the patient and their family? What cannot people do? How do they feel?
The data we collect by questionnaires will be invaluable for researchers to answer these questions so that treatment for melanoma patients can be improved in the future.
For rare families in which family members are at high risk of melanoma because they have inherited the same rare genetic mutation, is there an increased risk of other cancers too?
The information needed to answer these questions will come from the questionnaire you are asked to complete on family and personal history of cancer and for rare families with 3 or more cancers in close family members, MyMelanoma will generate the necessary genetic data from saliva samples contributed.
The complexity of these questions is the reason why we will need to recruit a very large number of people as cost-effectively as possible, collecting information from those people directly as well as adding to that information from their medical records. The planned project is very large which is why it will be phased.
The information gathered by MyMelanoma may be of value to researchers working in other fields of health research such as on other cancers, or the role of diet on health and requests to use the data for these purposes will be considered in due course.
What if I want to take part in MyMelanoma?
It is very important that you read this information carefully so that you know what taking part means for you. One of the most crucial issues for the MyMelanoma team is the obligation to safeguard personal data for example. This project has been set up to maximise the safety of your data and the necessary details are explained in Section 3.
You must have access to the internet and an active email account to register and thus take part in the project. If you do not have direct access, you can perhaps ask a family member or friend to help you enter your information, assuming they have access, or a member of your care team if that is appropriate. Study communication is via email and data collection is largely digital which is why these are required.
The information and the questionnaires will be available in Welsh. Many of the questionnaires are produced in Europe in many different languages and we will use those as necessary. For other patients still attending the hospital who don’t speak or understand written English then we hope to make the necessary information available as translated text in due course.
A full understanding of the implications of participation is required so that the MyMelanoma team will explore any potential language issues by telephone, text, or email with you. It would be possible to use a telephone translation service to aid the discussion, but the completion of questionnaires requires a good understanding of the language used and therefore regrettably a reasonable level of English is required for that in the absence of high quality translation.
Am I eligible?
The elibility criteria are as follows:
- Any person who is 16 years old or older, treated for melanoma of the skin or mucosal surfaces (excluding melanoma of the eye) at any time in the NHS.
- Any person who has had a gene test and has been told they are a carrier of a gene that increases the risk of melanoma.
- A person who has been given an invitation to take part as a family member of someone with melanoma irrespective of whether they themselves have had a melanoma.
Section 2: Taking part in MyMelanoma
I am interested in taking part, what happens next?
Step 1: Read and understand the following information
Please read this information carefully, and perhaps also watch the summary video(s) on MyMelanoma.org/videos. Do ask questions if you need to by email (with the option to request a text or phone call), to help decide whether you want to proceed or not. When you feel that you know enough to join the study then move on to Step 2.
Step 2: Registration (Will have a hyperlink here to take the participant to the registration page)
This step will require you to provide:
- Your full name and date of birth.
- Your home and email address (and a telephone number too if you would prefer to discuss by telephone rather than email at this stage).
- Your NHS number (you can provide this later if you don’t have it to hand).
Your date of birth and a study number will be used as your login to enable you to return to the Participant Section of MyMelanoma to complete questionnaires etc.
Step 3: Consent to take part in Phase 1 and 2
All participants will be asked to consent to the following:
- Completing two questionnaires within four weeks of the consent.
- Allowing MyMelanoma to match the information provided by the participant with their health data stored by the NHS and provided to MyMelanoma by NHS Digital or a similar organisation (see details provided in Section 3).
- Allowing MyMelanoma to take samples from their tissue routinely stored in hospital pathology laboratories, to perform tests on the tissue and to make the results of those tests in the MyMelanoma Research Database.
- Being recontacted once a year by e-mail to see if there has been any change in your health. It is possible that at that stage MyMelanoma would offer further participation in a related but different study at that time but you would not be obliged to take part. You would also be able to withdraw from the annual e-mail recontact at any time.
We would like you to contact us by email at any time if your melanoma health changes, but you would be not under any obligation to do so.
The consent form is online, and you will be asked to enter your initials into each box provided to consent. When you have completed the consent form then the system will summarise what you have agreed to and allow you to check that things are clear. If you are still happy to take part, then you will be asked to again enter your initials to finish the consenting process. You will be able to download a copy of the information provided and the consent form.
You will then automatically be assigned two numbers: your Study Number” (which you will need to enter your data into the system) and a unique identification (ID) number which will be used to identify the research information provided (this is a secret number that you will not know). See Section 3 to learn how we use the study numbers to keep any information you provide safe.
Step 4: Complete two simple questionnaires
After consenting, the following link will pop up on your screen which will direct you to two separate questionnaires we would like you to complete. The first is called the Melanoma and Family History Questionnaire and the second is called the Lifestyle and Health questionnaire.
The Melanoma and Family History Questionnaire will ask questions about your heritage, skin type, sun safety behaviours, sun exposure, and further details of your personal and family cancer history. We ask these questions because the information given will be used to carry out research into the cause of melanoma especially for rare forms of melanoma which least is understood. The family cancer history questions are asked as MyMelanoma seeks to provide data to researchers trying to identify inherited genes increasing risk in the rare melanoma patients whose family have had an unusually large number of cancer, and to estimate the risk of different cancer types in people carrying such genes. This information will be recorded in the databases using only your unique ID. Some of the questions in this questionnaire will identify participants who are recently newly diagnosed or just about to start drug therapy. These participants could consider taking part by giving more information [and in Phase 3 by providing a sample of blood and stool, ** (this clause will be added when Phase 3 is live)] in which case if you do give consent here then you will receive an email asking you to consider this additional request.
The Lifestyle and Health Questionnaire will ask questions about your lifestyle and general health including questions on diet, exercise, smoking history, prescribed drugs etc. This information is sought in order to provide information for researchers to determine which lifestyle factors, concurrent illnesses and the drugs prescribed for them have an effect on recurrence of the melanoma. If researchers find good evidence for particular diets etc then medical teams might in the future be able to suggest lifestyle changes which have a significant value for patients after a melanoma diagnosis.
Step 5: Route to Entry 1 Participants
People diagnosed within the previous six months are eligible to take part in Route to Entry 1 if they report that their melanoma was Stage I or higher. If a recently diagnosed patient states that they do not know their stage at diagnosis in the Melanoma and Family History questionnaire then they may be asked to provide details either in the form of a photo of their copy of the letter from the hospital to their GP, a photo of their biopsy report or details written on the MyMelanoma Flyer by their medical team.
Step 6: This step is for participants with Familial Melanoma
If participants enter information into the Melanoma and Family History questionnaire which suggests that they have melanoma in their family or an inherited genetic mutation associated with risk then an invitation to take part in this particular part of MyMelanoma will be sent to their email address. The email will provide some further information about the Familial Melanoma research, and we will ask them to sign a second consent form to provide a sample (with saliva or a small amount of blood) if they have not had a gene test in the past. We will also ask melanoma participants with a strong personal and/or family history of different cancers who have NOT had genetic counselling if they would consider asking other family mambers to take part in the study (Route to Entry 3) whether or not they have had melanoma themselves. This part of the project will be managed by Dr Antonia Pritchard in Scotland.
Step 7: In Phase 3, providing fresh samples, this section of the information sheet will only be available when Phase 3 is funded
In Phase 3 of MyMelanoma when we can collect samples, participants who have had their primary melanoma diagnosed within the last six months or are having treatment with targeted therapies or immunotherapy, will be asked to provide samples. Further information about the research and why samples are needed will be provided after triaging on the basis of the responses to the 2 initial questionnaires, followed by a second consent form to allow sampling to take place. These might be samples of blood, saliva or stool (poo).
Blood samples. Usually, these blood samples will be collected at the hospital at the time of routine hospital appointments. The blood volume taken is up to 40 ml (less than a tenth of an NHS blood donation) and may be taken only once or up to six times depending on whether you have just been diagnosed with primary melanoma or you are having drug treatment.
Stool (faecal) samples. Stool samples will be requested once from patients recently diagnosed with melanoma and twice when participants are just about to start drug treatments and just before their second treatment. You would be provided with a kit containing instructions on how the stool should be collected on each occasion. Both samples would then be mailed to the MyMelanoma team together using pre-paid postage labels. The MyMelanoma team have used these kits previously in other studies and they have worked very well.
Step 8: Receive Study Up-Date Emails
People who consent to take part will receive update emails annually giving news about how the research is progressing, news items from other participants, invitations to new projects to consider taking part in and seeking information on any new treatments received. Participants will of course be able to unsubscribe from this at any point.
Section 3: About your information
What information will you collect about me and what happens to it?
Information directly supplied by you
A lot of the most important information will come directly from you when you provide that information in response to queries or questionnaires.
Your contact details and summaries of any communications with you will be stored on the Data Cloud. No additional data, such as your medical details, will be stored in the same Data Cloud. This is a way of keeping your medical data in such a way that the MyMelanoma researchers would not know that it came from you.
What is the Data Cloud? The Data Cloud is a relatively new way of storing data on computers. It is considered safer to use Data Cloud providers to store data on huge computers (often multiple computers to protect from data loss in the event of hardware failure), as those specialised providers use the most up to date technical platforms to guarantee the data are kept securely. NHS Digital has produced guidance on the use of these providers. The NHS Digital Guidance makes it clear “that data must only be hosted within the UK, the European Economic Area, in countries deemed adequate by the EU, or in the US where it is covered by the Privacy Shield”. MyMelanoma will adhere to all regulations identified by the NHS as required.
MyMelanoma will collect information about your lifestyle, health, family history, etc using questionnaires. Data will be collected using a tool called Redcap and will be stored on the Data Cloud, in line with good data governance practices.
Information about your health from the NHS
You will also be asked to agree to MyMelanoma following your health as long as funding is available, to answer the important questions listed in Section 1. We hope that this will be for many years, provided that you do not decide to withdraw from the study. This information will mainly be collected passively from medical records using NHS data.
Essentially, we cannot do the study without this information because it would put too much strain on the NHS to ask doctors and nurses to supply NHS data about your treatment given the necessary large size of this study. So, if you do not wish to agree to these parts of MyMelanoma, you will unfortunately not be able to join.
These types of NHS data are collected by the UK Public Health agencies in England, Northern Ireland, Scotland, and Wales (PHE, PHNI, PHS and PHW respectively). In each country, there is a slightly different way that the Public Health Agencies provide these data to researchers: in England in 2021 it is via NHS Digital. MyMelanoma will obtain the information via whatever agencies the government puts in place to deliver data to bona fide researchers. The four governments in the UK have developed approaches to use this information for research where the research is approved by ethics committees and the consent is given by participants is sufficiently specific and informed. The UK is one of the few countries in the world with a National Health Service and therefore this research data enables research that no other country can currently match.
Information collected by the NHS, which will access for this research project includes the following:
- Cancer registration data. When a new cancer is diagnosed in any person in the NHS, the hospital provides information to Public Health Agencies so that the UK can monitor trends, much as occurred during the COVID-19 pandemic. Trends in the number of cancer cases, and survival from that cancer.
- Records of registered deaths and the cause of death.
- Records of hospital admissions in the form of codes for conditions treated.
- Data from primary health care records.
- Records of drugs prescribed.
- SACT: a national database of drug treatments of patients with cancer is held by PHE.
Data from Genomics England.
Additional sources of data that the agencies will add to the database in the future for the benefit of patients treated in the future.
Linking up the information you would provide with that from the NHS
To get the maximum benefit from the data you provide directly, and that which the NHS holds about you we must ‘link’ the separate datasets securely, and in a way which safeguards your identity and private data. This is done using a process called pseudonymization.
Pseudonymization means that the data you provide yourself will be labelled with the ID number provided at consent. You will not know that number. The ID number is generated by the computers running the portal and the link between your name and the number in what is called a pseudonymization key. This key will be protected in the system with access to it limited to very few people obliged contractually to work within the law.
The MyMelanoma recruitment team must know your name and email address to be able to contact you. They will use the pseudonymization key to produce a list of the ID numbers of participants who have consented to take part. They will send those ID numbers to NHS Digital (or a similar agency) who will also use the pseudonymization key this time to find out your name and NHS number which they need to trace your NHS data. When these agencies supply the data then to MyMelanoma it is labelled only by the ID number.
The only people who will be able to make this link will be specific employees of the agencies managing NHS data and the MyMelanoma recruitment team. The other MyMelanoma staff e.g., statisticians working in the analysis team would only ever work with the data labelled by ID number only.
Laboratory Data: this section will only be used in Phase 3 when samples are being collected
Results from any tests performed on blood, saliva, tissue and stool samples will eventually also be placed in the MyMelanoma database. The samples will usually not be processed very quickly: they will be stored and then processed in batches. This delay is deliberate as test results vary according to when they are run and keeping samples (once they have been stabilised) reduces the error rate.
Information about you in the our Melanoma Research Database:
Eventually, all the lifestyle, family history, health and laboratory data will be combined and held within the Data Cloud with the NHS clinical data in the MyMelanoma Research Database. The MyMelanoma statisticians’ job will be to check the data and sort out inconsistencies, address missing data so that the quality of this dataset will be as high as it could be. This will be pseudonymised: no one should be able to know that the information was from or about you. The analysis team will also generate new data. For example, MyMelanoma will ask you to contribute information on your diet, and the analysis group will use statistical tools to convert that information into a measure of that diet eg a high or low fibre intake diet.
The information will be made available to researchers internationally as soon as the data quality is confirmed, and enough participants have taken part. It is anticipated that this will be in distinct stages so for example that we might be able to make available participant-reported information on the impact of melanoma treatment on their life, in the short term, at around 2 years. But that large scale processing of samples after Phase 3 begins may take a few years. This has been true of UK Biobank, but the investment in time has been important as the information stored by UK Biobank is now being used all over the world several years after the project began. We hope that a significant proportion of the data will be of value to researchers looking at human responses to other cancers.
It is not yet known where this data repository will sit as it will be a significant number of years between the initiation of the study and the time at which the repository will be made accessible. The legal and technological infrastructures are likely to continue to change and MyMelanoma will ensure that the data storage occurs to the highest levels of security. The resource might for example be sited within national information systems such as NHS Digital but whatever site the data will be pseudonymized and compliant with regulations developed within each Public Health Service participating in the UK. No data will be released to researchers until the data set is securely housed.
We stress the importance of anonymity: information used for research must never be identifiable so the data will not contain information such as name, date of birth, the precise date of diagnosis, postcode, or hospital you were treated at. Nor could data reasonably be inferred from the data collected.
How will my information be kept safe when the linkage between the information I provide, and my NHS records occurs?
Stringent security measures to prevent unauthorised access and/or use are in place, including physical and logical access controls, computer/device security measures, confidentiality agreements and staff data protection training. Computer security measures are in place to block unauthorised access (for example, by “hackers”) to the study computers and Data Clouds that hold personal information.
Data or samples provided to researchers outside MyMelanoma, or the Public Health Agencies will not include any personal identifiers, names, NHS numbers, dates, postcodes etc. Moreover, such researchers must confirm that they will not make any attempt to identify individual participants. MyMelanoma and Public Health Agency staff also sign confidentiality agreements as part of their job contracts and are trained in the appropriate handling of personal data.
Insurance companies and employers will not be given any individual’s information, samples, or test results, and nor will we allow access to the police, security services, relatives, or lawyers, unless forced to do so by the courts.
Who will use my information?
Information and samples from MyMelanoma participants will be available only to researchers who provide evidence that their research will be relevant to cancer patients and in the public good. Their institution will be obliged to approve the data transfer and undertake to keep the data securely and for use only by the scientists requesting the data. This may include researchers who are working in other countries and commercial companies such as pharmaceutical companies looking for new treatments. MyMelanoma understands that we will make progress faster if academic centres, patients, and commercial enterprises work together as has been vividly illustrated by the development of COVID vaccines. Users of the data may be based in any part of the world.
These data will be of unparalleled value to researchers working on melanoma and other cancers and will be held in the Research Database to which researchers will apply for access. A committee will review applications for access to the data based upon employment by bona fide research organisations or scientific papers published. This approach has been pioneered by UK Biobank, and the vision of MyMelanoma is that of sharing information between melanoma researchers around the world resulting in the fastest progress in research on melanoma for the benefit of patients. The UK Biobank web page details the research the Biobank has supported, and we hope that MyMelanoma will have similar value for melanoma patients in the future.
The data provided will be primarily used to address the aims described above, all of which relate to melanoma. Some of the data however would potentially be of value to research on other aspects of care for melanoma patients and of additional health issues such as other types of cancer. The resource would therefore be available to such researchers if the access committee views their request as valid and in the public good.
There will be a requirement to publish the results of all research based on the resource so that people can benefit from it. Many researchers will produce new data and they will be obliged to return these data to MyMelanoma so that they can be used by others.
Responsible members of the University of Oxford and the relevant NHS Trust(s) may be given access to data for monitoring and/or audit of the study to ensure that the research is complying with applicable regulations.
Will I get results from any tests performed on samples I might later donate?
The results of any tests performed on samples will not be returned to you for several reasons listed below. This is a decision made by the MyMelanoma team as was made previously by the UK Biobank. We find this a difficult issue as we very much believe in transparency, and we, therefore, undertake to keep this question under review.
The principal reason is that because the tests are being performed for research the significance for melanoma patients of test results will not be clear until much later.
Due to the scope and size of the study, it would also not be feasible to feedback results with the necessary support for participants. Research groups are carrying out projects to devise mechanisms to address this issue and we undertake to utilise these systems if it is possible at a later stage.
The single exception to this will be taken for people taking part in Route to Entry 3, with melanoma in their family. People who are considering participation in this study will be provided before consenting with additional information on what taking part means to them and what MyMelanoma would be able to do if a potentially important finding was made.
Where will the results of the research be published?
The results of the studies will be published in scientific journals. MyMelanoma will encourage users of the data to publish in journals that are “open access” meaning that the journals do not require payment for access to the papers and therefore anyone can access those papers.
Summaries of these papers using any data collected including those derived using the UK Biobank resource will be made available to participants and anyone else who might be interested, online via www.mymelanoma.org. The summaries will be written in as accessible language as possible so that people who are not scientists or medically trained can understand them. As is usual, new results will be presented by researchers at conferences internationally, and the MyMelanoma team will support online videos of these where possible using YouTube. We will seek to present data at conferences attended by participants and melanoma patients/ survivors such as the UK Melanoma Patient Conference.
What happens if I change my mind in the future?
Potential participants are asked to discuss any concerns that they might have with a member of the project team before agreeing to participate. It is better not to take part rather than to feel unhappy about it later.
You can however opt out of the research at any point. There is a formal process for requesting opt-out and there are different ways of doing this.
“No further contact”: This means that MyMelanoma would no longer contact you directly but would still have your permission to retain and use the information and any samples provided previously and to obtain and use further information from your health records.
“No further access”: This means that MyMelanoma would no longer contact you or obtain further information from your health records in the future but would still have your permission to use the information and samples provided previously.
“No further use”: This means that, in addition to no longer contacting you or obtaining further information about you, any information and samples collected previously would no longer be available to researchers. MyMelanoma would destroy your samples (although it may not be possible to trace all distributed sample remnants) and would only hold your information for archival audit purposes. Details of your original consent and withdrawal would be kept as a record of your wishes in a secure data vault to which only the Data Custodion has access. Such a withdrawal would prevent information about you from contributing to further analyses, but it would not be possible to remove your data from analyses that have already been done.
We will act on your opt-out request, in line with the above options, and will keep a record of it, so that we can comply with legislative requirements of data protection called UK GDPR.
Who is organising and funding the study?
The Chief Investigator is Professor Mark Middleton of the University of Oxford, and the sponsor is the University of Oxford. Initial funding has been provided by the melanoma charity Melanoma Focus, the University of Oxford and Cancer Research UK via their Cancer Centre Programme.
What happens if something goes wrong?
The risks of participants suffering harm as a result of taking part in this study are minimal. The University of Oxford, as Sponsor, has appropriate insurance in place in the unlikely event that you suffer any harm as a direct consequence of your participation in this study. NHS indemnity operates in respect of any clinical treatment which is provided.
If you wish to complain about any aspect of the way in which you have been approached or treated, or how your information is handled during the course of this study, you should contact Professor Mark Middleton, email address firstname.lastname@example.org, telephone number 01865 617331 or you may contact the University of Oxford Research Governance Ethics & Assurance (RGEA) office on 01865 616480, or the director of RGEA at email@example.com.
The Patient Advisory Liaison Service (PALS) is a confidential NHS service that can provide you with support for any complaints or queries you may have regarding the care you receive as an NHS patient. PALS is unable to provide information about this research study. If you wish to contact the PALS team please click here for contact details.
Who has reviewed MyMelanoma?
All research in the NHS is looked at by an independent group of people, called a Research Ethics Committee, to protect participants’ interests. This study has been reviewed and given favourable opinion by South Central Oxford C Research Ethics Committee.
The Privacy Statement on the MyMelanoma web page describes how your data will be used and to whom participants can complain if they are unhappy about how data is processed in the study.