Will my taking part in the study be kept confidential?
We will follow ethical and legal practice and all information about you will be handled in confidence.
If you join the study, the data collected for the study will be looked at by authorised persons from the University of Nottingham and the University of Montpellier Hospital who are jointly organising the research.
Under UK Data protection laws the University of Nottingham is the data controller (legally responsible for the data security) and the chief investigators of this study are the data custodians who manage access to the data. This means we are responsible for looking after your information and using it properly. Your rights to access, change or movement of your information are limited as we need to manage your information in specific ways to comply with certain laws and for the research to be reliable and accurate. To safeguard your rights we will use the minimum personally identifiable information possible. You can find out more about how we use your information and to read our privacy notice at https://www.nottingham.ac.uk/utilities/privacy.aspx/
The data could be looked at by authorised people to check that the study is being carried out correctly. All will have a duty of confidentiality to you as a research participant and we will do our best to meet this duty.
What will happen if I don’t want to carry on with the study?
Your participation is voluntary, you are free to withdraw at any time, without giving any reason, and without your legal rights being affected. If you withdraw then any anonymous information collected so far cannot be erased and this information may still be used in the project analysis. Any identifiable data already collected will be withdrawn at your request.
All information which is collected about you during the course of the research will be kept strictly confidential and stored on a password protected database.
You will have a choice of whether you provide your name and contact details for us. This would only be used with your consent and if you wished us to contact you to participate in future studies using the questionnaires.
All other data (research data) will be kept securely for 7 years and then safely disposed of. During this time all precautions will be taken by all those involved to maintain your confidentiality, only members of the research team will have access to your personal data.
Involvement of the General Practitioner/Family doctor (GP)
There will be no involvement of your GP / Family doctor.
Who is organising and funding the research?
This research is being organised by the University of Nottingham and is being sponsored by the the Centre de Reference des maladies Lymphatiques Primaires, University Hospital of Montpellier and supported by the International Lymphoedema Framework (ILF), a UK registered charity.
Who has reviewed the study?
This study has been reviewed and given favourable opinion by The University of Nottingham, Faculty of Medicine and Health Sciences Research Ethics Committee
Further information and contact details
Professor Christine Moffatt CBE Emeritus Professor, University of Nottingham,
Nottingham University Hospitals NHS Trust
Queens Medical Centre,
Nottingham, NG7 2UH