What does the BOSS study mean for me/ my child?

The BOSS study means that your doctors will be asked to send some details about your child’s condition to the study team based at The University of Liverpool.

The information is routine information about your child’s diagnosis, x-ray findings and the treatments undertaken. No personal identifiable information will be sent to these researchers without your express consent.

Some children and their parents will also be asked to give specific information to the study team about pain, activities and feelings.   This information will be important to will enable us to understand more about hip diseases in childhood which will allow us to offer better treatment for children in the future.

Patient registration

If you were newly diagnosed with Perthes’ Disease, or Slipped Capital Femoral Epiphysis in the UK between 4th April 2016 and 30th Sept 2017 you should have either received a letter from your surgeon inviting you to take part in the BOSS Study, or your surgeon may have already invited you to complete some forms on paper.

If you have receive a letter this will have a "Unique Access Code” that will identify you to us, and enable you to enter the study. In order to register online you will need the access code in the letter you received - please ensure you have that to hand before proceeding.

There's more information below in the downloadable information leaflets, but If you're satisfied that your questions have been answered and are happy to proceed - click the button below!

Study information leaflets

We have created some information leaflets targeted at patients of different ages, and their parents, which you can view and download to discuss with them.

Who can help me with my child's condition?

The Perthes Association is the UK charity that is supporting the Perthes element of the BOSS study. The Perthes Association has a long track record of supporting families affected by Perthes’ disease, and regularly organises meetings of families affected. The BOSS study team is very grateful to the Perthes Association for their support.

STEPS is the UK charity that is supporting the Slipped Epiphysis element of the BOSS study. STEPS has a long track record of supporting families affected by diseases of the hips. The BOSS study team is very grateful to STEPS for their support.

YOUR INFORMATION WITHIN BOSS

The University of Liverpool is the sponsor for this study based in the United Kingdom. We will be using information from you and your medical records in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. The University of Liverpool will keep identifiable information about you for 20 years after the study has finished, though we may seek to extend this in future.

Your rights to access, change 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. To safeguard your rights, we will use the minimum personally-identifiable information possible.

You can find out more about how we use your information at the end of this page under “How we use your information” section.

Your NHS hospital will collect information from you and your medical records for this research study in accordance with our instructions.

Your NHS hospital will use your name, NHS number and contact details to contact you about the research study, and make sure that relevant information about the study is recorded for your care, and to oversee the quality of the study. Individuals from the University of Liverpool and regulatory organisations may look at your medical and research records to check the accuracy of the research study. Your NHS hospital will pass these details to the University of Liverpool along with the information collected from you and your medical records. The only people in the University of Liverpool who will have access to information that identifies you will be people who need to confirm your participation in the study, contact you to provide a summary of the findings at the end of the study (if you have registered your wish to receive this), or audit the data collection process. The people who analyse the information will not attempt to identify you or find out your name, NHS number or contact details.

Your NHS hospital will keep identifiable information about you from this study for 15 years after the study has finished/ until documents are no longer needed.

The University of Liverpool will also collect information about you for research from NHS Digital and other central UK NHS bodies. This information will include your name, NHS number and health information, which is regarded as a special category of information. We will use this information to enable us to follow you up in the long-term, principally to identify if your hip needs to be replaced, by linking the information we hold to other national datasets detailing hip replacement data.

When you agree to take part in a research study, the information about your health and care may be provided to researchers running other research studies in this organisation and in other organisations. These organisations may be universities, NHS organisations or companies involved in health and care research in this country or abroad. Your information will only be used by organisations and researchers to conduct research in accordance with the UK Policy Framework for Health and Social Care Research.

Your information could be used for research in any aspect of health or care, and could be combined with information about you from other sources held by researchers, the NHS or government.

Where this information could identify you, the information will be held securely with strict arrangements about who can access the information. The information will only be used for the purpose of health and care research, or to contact you about future opportunities to participate in research. It will not be used to make decisions about future services available to you, such as insurance.

Where there is a risk that you can be identified your data will only be used in research that has been independently reviewed by an ethics committee.

HOW WE USE YOUR INFORMATION

The University of Liverpool takes great care to abide by our legal and moral obligations when handling your personal and healthcare data. Due to changes introduced in the EU General Data Protection Regulation (GDPR), we would like to provide you with information on the lawful basis on which we are processing your data. The lawful basis for the processing of your personal data for the research study which you have participated in is a “task in the public interest”.

As a university we use personally-identifiable information to conduct research to improve health, care and services. As a publicly-funded organisation, we have to ensure that it is in the public interest when we use personally-identifiable information from people who have agreed to take part in research. This means that when you agree to take part in a research study, we will use your data in the ways needed to conduct and analyse the research study. Your rights to access, change 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 withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.

Health and care research should serve the public interest, which means that we have to demonstrate that our research serves the interests of society as a whole. We do this by following the UK Policy Framework for Health and Social Care Research.

If you wish to raise a complaint on how we have handled your personal data, you can contact our Data Protection Officer who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO).

Our Data Protection Officer is Victoria Heath and you can contact them at LegalServices@liverpool.ac.uk.