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MND Register

Information | Patient information sheet

Project title: MND Register for England, Wales and Northern Ireland

You are being invited to take part in a research study. Before you decide it is important for you to understand why the research is being done and what it will involve. Please take the time to read the following information carefully. Talk to others about the study if you wish. Ask us if there is anything that is not clear or if you would like more information. Take the time to decide whether or not you wish to take part. (n.b. the wording for this page is taken directly from our research information sheets so some sentences only make sense in context of the clinic, if you have any trouble understanding it please contact us)

You can click on the questions below to find out more about the study:

Motor neuron disease (MND) affects about 5000 people in the UK at any one time, but the true figure is not known as there is no single source of information about who is affected. The purpose of the study is to collect and store information about every person with MND in the UK. Counting every person with MND allows us to work out the number of people diagnosed with MND per year, how many people currently have the disease and how this is changing with time. Information such as gender and ethnicity can be used to look for characteristics of people more likely to develop MND. We will also collect information about where people with MND live to allow for planning the care of people with MND to take place. It will also tell researchers more about the possible causes of MND. We collect information about the disease itself, for example, where you first noticed symptoms, so we can look at how this relates to disease progression.

You have been invited to take part because you have been diagnosed with MND and are a resident in England, Wales or Nothern Ireland.

No. It is up to you to decide whether or not to take part. If you do, you will be given this information sheet to keep and be asked to sign a consent form. The standard of care you receive will not be affected.

Nothing will happen to you directly. A research worker will collect information, including confidential information which is why we require consent, from your clinical notes and store it in a secure database (a computer program for storing information).

The sponsor and data controller for this project will be King’s College London (KCL). The University will process your confidential data for the purpose of the research outlined within this information sheet. The legal basis for processing your data for research purposes under the General Data Protection Regulation (GDPR) is a ‘task in the public interest’. You can provide your consent for the use of your confidential data in this study by completing the consent form that has been provided to you. Questions, comments and requests about your confidential data can be sent to the KCL Data Protection Officer, Mr Albert Chan: info-compliance@kcl.ac.uk. If you wish to lodge a complaint with the Information Commissioner’s Office, please visit www.ico.org.uk

Your data will be processed in accordance with the GDPR. The confidential information we collect as part of the research includes name, date of birth, hospital number, NHS number, and full postcode. We collect this information along with clinical information relevant to your condition. This information is only accessed by members of the research team, who are under the supervision of the project chief investigators and have completed appropriate training. We use this information to confirm you have not previously taken part in the research and to allow us to access your medical records, as well as to answer research questions and plan the delivery of care for people with MND.

We will never share identifiable information outside the research team. Any research collaborators will use your confidential information in a de-identified format, meaning we will remove any data that would allow others to identify you. Any research collaborators that use the data will sign a data sharing agreement before your de-identified data can be provided to them.

You can find out more about how we collect, process and store your data by contacting the study team at mndregister@kcl.ac.uk or via phone on 0207 848 5258.

You will be free to withdraw at any time and without giving a reason. A decision to withdraw at any time, or a decision not to take part, will not affect the standard of care you receive. Your rights to access, change, withdraw 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 would like to withdraw your data, please contact the project manager Andrea Bredin or Lynn Ossher. We will remove any identifiable information about you but keep de-identified clinical data for analysis. If you decide to withdraw from the study, any de-identified information already collected will be included in the study.

We will collect your name, date of birth, hospital number, NHS number and post code of residence. This information is collected alongside clinical information about your condition. This information will be used to check that no one is entered more than once and so that we can access medical records to collect the clinical data.

This information will be stored on computers owned by King’s College London and Oxford University. These computers will be securely controlled by the research team, under the direct responsibility of Professor Ammar Al-Chalabi or Professor Kevin Talbot. We, and other research collaborators, will use a de-identified version of your information to find out more about people with MND.

In the future it is possible we might have new research questions which could be answered by looking at your information in new ways. However, if applicable, we would seek approval from a Research Ethics Committee to use your information for entirely new research projects. If a Research Ethics Committee believed we should contact you again to ask your permission to re-use your information, we will do so.

The information we collect in this project will be kept for 10 years after the project has ended when data use will be reviewed. Wherever you are being treated has a duty to ensure research conducted here is of a high standard and auditors from the hospital may need to review any information we hold about you. The auditors will maintain the highest standards of confidentiality. Procedures for handling, processing, storage and destruction of your information are compliant with the GDPR and Data Protection Act 2018.

If you would like to formally consent for the study, ask the person who gave you this leaflet for a consent form (if they have not already given you one with this information sheet). The information will then be collected from your medical records by the project workers.

It is possible that your confidential data could get lost or stolen. To minimise this risk your information is stored in a secure, password protected database in accordance with NHS recommendations and standards. Your confidential information is stored in a separate file to the clinical and demographic information and is only visible to the team members who are under the supervision of the project chief investigators and have completed appropriate training.

There is no specific benefit to you in taking part in this research. We anticipate that this information will improve our general understanding of disease progression, likely survival times and in identifying those who may be at risk of developing MND. This will contribute to improved care planning. However, it is possible, through this Register, that you may be given the opportunity to take part in other research studies.

If you have a concern about any aspect of this study, you should ask to speak with the researchers who will do their best to answer your questions. If you remain unhappy and wish to complain formally, you can do this through the Patient Advice and Liaison Service at your local hospital. Details can be obtained from King’s College Hospital via phone 020 3299 3601 or email kch-tr.PALS@nhs.net

If you agree to take part in this study, the project managers will need to collect your clinical records from your local neurologist or GP. This would be done with the full approval and knowledge of your neurologist or GP.

We hope that the results of this study will be suitable for scientific publication in biomedical journals, and for communication to patients via the Motor Neurone Disease Association. You will not be personally identified in any way.

This research is being organised by Professor Ammar Al-Chalabi at King’s College Hospital and Professor Kevin Talbot at the John Radcliffe Hospital, Oxford and is funded by the MND Association. The research team or your doctor will not receive any payment if you take part.

This study has been reviewed by the London – South East NRES Committee on behalf of the National Research Ethics Service for England (NRES). They have checked this study with your interests in mind to ensure that you will not be harmed by the study and to ensure that your care is unaffected. It has been given a favourable ethical opinion for conduct in the NHS. An external review process run by the Motor Neurone Disease Association reviewed the scientific basis of the study before we were awarded our funding.

Independent from the current study, and if you consent, you may be offered the opportunity to participate in other studies. These studies will be explained separately, and you would give consent for them specifically. Agreeing to be contacted about other research does not oblige you to take part. You can decline to be contacted and this will not impact on your ability to participate in the current study or your future clinical care.

Motor Neuron Disease Register project managers:

  • Lynn Ossher: 01865 227714 or lynn.ossher@ndcn.ox.ac.uk
  • Andrea Bredin: 0207 848 5258 or mndregister@kcl.ac.uk

Thank you for considering taking part in this research project, and thank you for taking the time to read the information sheets. Go to sign up (this will take you to a different page on the website)