Research

For Researchers

We are pleased to work with universities and clinicians across the UK to support research into endometriosis, its treatment and management.

We get many requests from researchers for assistance with their research including university research groups, clinicians, PhD students, Masters students, undergraduates and commercial organisations.

We review requests on a case-by-case basis and due to volume of request can only work with some. We are generally unable to help undergraduates and only able to help some Masters and PhD research projects.

Types of support we have provided include providing expert advice, helping with research design, supporting the development of surveys, promoting research studies via our social media and helping find PPI (Patient and Public Involvement) and study participants. Currently we do not provide funding for research nor financial support for research students.

Research guidance

If you are a university researcher or a clinician considering a new project please contact us if you would like to discuss how we could be involved with your project and options for PPI support. Please contact us with an overview of the research proposal and how you would like us to help you.

Guidance for PhD Students

If you are a PhD student and already have funding and ethical approval and would like us to consider helping with your project, please contact us with a description of the research you are undertaking and how you want to engage participants e.g., to complete an online survey, recruiting participants for a focus group. We will be in touch to find out more details and will need the following information to consider your request:

  1. A copy of the IRB or relevant ethics committee approval to conduct your research.
     
  2. For a survey, a full list of questions to review prior to agreeing to distribution, please supply this as a word document (or similar) to make commenting easier. Once the survey has been finalised we will require a link and will do a final review.
     
  3. Draft text for social media, an accompanying image, and the email address to be publicised for contact details. Most participants will see the research promoted on social media and respond via a smart phone, please ensure that your survey is mobile device compatible before you send us the final link.
     
  4. An idea of any deadlines you may be working to.
     
  5. An idea of how many participants are required

Please also note the following:

  1. The research study/survey will need to have IRB or the appropriate ethical approval before we will consider it.
     
  2. We will not share a survey that asks for contact details, unless there is a research need for this e.g., for longitudinal follow up.
     
  3. Surveys/research will be shared via social media.
     
  4. Our schedule for distribution of surveys will be managed to fit in with other activities of the organisation, including other research surveys and studies; we cannot guarantee to work to external deadlines.

Commercial Organisations

Endometriosis UK is sometimes approached for assistance with research projects by commercial organisations including pharmaceutical companies, medical technology companies, and contract research organisations. The kind of assistance requested includes input on study design, review of patient materials, patient input and help recruiting patients to take part in research.

As a charity, we evaluate such potential collaborations carefully, ensuring that we only participating where the research has clear benefits for the endometriosis community. If you are a commercial organisation and would like us to consider collaborating with you on a research project, please contact us.

Research Activities

We are involved in a wide range of research activities, aiming to ensure the views of those with endometriosis are always considered in research. This includes being a partner in clinical trials, helping with PPI (public and patient involvement) to ensure input from patients, reviewing patient materials and helping to recruit study participants. We input into study design, patient information materials and patient surveys and share research surveys. 
 

Current Projects

 

EUmetriosis

EUmetriosis - Focused on improving the lives of those affected by endometriosis in Europe.

Overview: EUmetriosis is a research project focused on improving the lives of people affected by endometriosis in Europe and beyond. goal is to better understand the condition, find new ways to manage it, and make sure that people with lived experience are at the heart of everything we do.

Using a multipronged approach, the EUmetriosis project aims to address critical unmet clinical needs around endometriosis.

With involvement of patient organisations and patients with diverse real-life experiences across Europe, the project will explore how patients perceive self-management in the light of existing stigma and dismissal in clinical interactions.

Find out more: Advancing How Endometriosis Is Understood, Diagnosed And Treated

 

Endear

ENDEAR - Research on Experiences of Endometriosis to Improve Healthcare: A New Study Between Endometriosis UK, Cysters and the Nuffield Department of Primary Care Health Sciences at the University of Oxford

Overview: Endometriosis UK, Cysters and the Nuffield Department of Primary Care Health Sciences at the University of Oxford are working in partnership in a study about using experiences of endometriosis to improve healthcare. As part of an ongoing commitment to joined up working, the study brings together lived and learnt expertise to push forwards for better endometriosis healthcare and support for all.

Endometriosis is finally getting more attention and focus in the media, policy, and beyond. Alongside campaigning and awareness-raising, research is an important way to bring about change for the better. Join us in finding out what matters to the people affected by endometriosis and learning from these experiences.

Find out more: Experiences of endometriosis — Nuffield Department of Primary Care Health Sciences, University of Oxford

ENDO1000

Endo1000 - UK-wide research project that will collect data and biological samples from 1000 individuals with endometriosis. The resulting resource will allow much needed research into the development of personalised care for people with endometriosis.

Overview: The objective of the ENDO1000 project is to accelerate discovery and advance data-driven research into endometriosis diagnosis and treatment.

Our innovative approach will gather rich data that sheds light on the everyday experiences of those living with this condition. By collecting information from participants over time, we’ll be able to spot patterns and make meaningful comparisons among individuals.

The project's mission is to reduce diagnostic delay and develop personalised treatment approaches for individuals with endometriosis by studying data and biological samples collected from patients over an extended period of time.

Find out more: Endo1000 | The UK-wide Endometriosis Research Project

 

Roadpain

RoADPain - The role of adolescent dysmenorrhea (period pain) as a risk factor for chronic pain.

Overview: RoADPain is a research project which aims to understand the role of adolescent dysmenorrhea (period pain) as a risk factor for chronic pain. We will use what we learn about the long term risks of period pain, including how long it takes for experiencing period pain to increase your risk of chronic pain, to make sure period pain is taken seriously and to produce advice and guidance for those with period pain, health professionals, policy makers and educators.

Find out more: For more information about the study and how to get involved please visit:  RoADPain — Nuffield Department of Women's & Reproductive Health 


 

Completed Projects

EndoVoices

EndoVoices: Understanding the links between Endometriosis, mental health, and wellbeing through the voices of people with lived experience. 

Endometriosis can have a profound impact on mental health and wellbeing. The EndoVoices study is a co-produced project trying to better understand and spread awareness of the links between endometriosis, mental health and wellbeing from the perspective of those with lived experience, working in partnership with Endometriosis UK and the Co-production Collective at UCL. 

Find out more: For an overview of the project please watch the webinar we hosted here


Regal

REGAL - Recurrence of Endometriosis: Clinical and Cost-effectiveness of Gonatropin Releasing Hormone Analogues with Add-back HRT Versus Repeat Laparoscopic Surgery

Regal is a clinical trial considering how best to treat those who have already had surgery for endometriosis but then at a later date experience recurrence of endometriosis pain.  The trial compared further surgery versus hormonal treatment, and wass run by the University of Aberdeen.

The randomised controlled trial compared long-term GnRH analogues (hormones which temporarily stop the ovaries producing oestrogen, ‘medical menopause’) with added HRT compared to keyhole surgery in women who experience recurrence of endometriosis pain after surgery, but who wish to preserve their fertility.

Find out more: Recruitment for this study has completed however if you have been involved please fill out the survey. Further information can be found on the REGAL website.


ESPriT2

ESPriT2 - Effectiveness of Laparoscopic Removal of Superficial Peritoneal Endometriosis for the Management of Chronic Pelvic Pain

Run by the University of Edinburgh, ESPriT2 was a randomised controlled trial to determine whether laparoscopic removal of isolated superficial peritoneal endometriosis (SPE) by excision or ablation is of benefit for the management of chronic pelvic pain. Isolated SPE means that no deep endometriosis has been found on organs such as the bowel, only endometriosis on the peritoneal lining of the pelvic cavity.

The study compared patients with SPE who have had endometriosis surgically removed via laparoscopy with patients who have had only a diagnostic laparoscopy i.e. no removal surgery took place. Participants will be randomly assigned to having diagnostic laparoscopy only or laparoscopy and removal, and will not know which procedure they had. 

Researchers will also be able to compare patient outcomes for different methods of laparoscopic removal of endometriosis, namely ablation and excision.

Find out more: Further information can be found on ESPriT2 website

 

 

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