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Additional Participant Information

Predicting Endometriosis Mechanisms and Populations (PEMP)

Many women’s health conditions have limited treatments available and poor outcomes, in part due to the lack of understanding of the disease and lack of data available. This is particularly true for endometriosis, a condition that affects 1 in 10 women. Diagnostic delays can average 7-10 years, whilst treatments at the moment involve recurrent surgeries and hormonal contraceptives. You are being invited to take part in a research study to address this. You have been asked to participate as you are considering undergoing a procedure related to your gynaecological health, either through surgery or through insertion of a coil.

Mission

This study aims to build knowledge in women’s health by using  the information we can gather from endometrial tissue (a small sample from the lining of your uterus) and lesion biopsies (the tissue  you may be undergoing surgery to remove). By looking at these samples and comparing  it with health outcomes, we will be able to find new insights into the  disease. This can help us find early diagnostic markers, better understand diseases and give us the tools that allow us to build the right models in the lab to find new treatments.

What does the study involve? 

We have developed this study protocol to minimally interfere with patient care and require no additional visits to the NHS sites by the participants. We are integrating sample collection within the patient journey, so that we may better understand what dictates outcomes of that journey. In short, we are collecting endometrial tissue to better understand who gets endometriosis, who gets it the worst and how can we better model the disease in a dish to find a cure. 

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This involves collection of tissue from women with and without endometriosis, especially endometrium (the lining of the uterus/womb), at a time where access is made available (during a procedure) or through collection of menstrual fluid.

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If you choose to participate, you will be given a participation information sheet and a consent form via an electronic platform. If you want to participate but have not been approached by your clinician about this, please reach out for more information here.  

Using your Data - additional information on International Transfers

We may share or provide access to data about you outside the UK for research related purposes to:

  • Share some aspects of your data with our academic collaborators within the EU. 

  • Centralise knowledge in the women’s health field by combining our information with other key players in and outside of the UK.  

  • Engage in partnerships that may further the development of treatments in women’s health.

 

If this happens, we will only share the data that is needed. We will also make sure you can’t be identified from the data that is shared where possible. This may not be possible under certain circumstances – for instance, if you have a rare illness, it may still be possible to identify you. If your data is shared outside the UK, it will be with the following sorts of organisations:

  • Academic institutions and groups within them performing research in women’s health. 

  • Commercial institutions such as pharmaceutical companies and other biotechs with whom we may look to partner to develop treatments in the field. 

 

We will make sure your data is protected. Anyone who accesses your data outside the UK must do what we tell them so that your data has a similar level of protection as it does under UK law. We will make sure your data is safe outside the UK by doing the following:
 

  • Some of the countries your data will be shared with have an adequacy decision in place. This means that we know their laws offer a similar level of protection to data protection laws in the UK.

  • We use specific contracts approved for use in the UK which give personal data the same level of protection it has in the UK. For further details visit the Information Commissioner’s Office (ICO) website: https://ico.org.uk/for-organisations/uk-gdpr-guidance-and-resources/international-transfers/

  • We do not allow those who access your data outside the UK to use it for anything other than what our written contract with them says

  • We need other organisations to have appropriate security measures to protect your data which are consistent with the data security and confidentiality obligations we have. This includes having appropriate measures to protect your data against accidental loss and unauthorised access, use, changes or sharing

  • We have procedures in place to deal with any suspected personal data breach. We will tell you and applicable regulators when there has been a breach of your personal data when this is legally required. For further details about UK breach reporting rules visit the Information Commissioner's Office (ICO) website: https://ico.org.uk/for-organisations/report-a-breach

  • We have contracted extra cyber insurance to ensure that where your data is not meant to be shared, it is protected by experts in the field of cyber security.

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