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Endometrial Cancer Microbiome Pre-Study

 

Nau mai, haere mai, welcome to the Endometrial Cancer Microbiome Pre-Study

We invite eligible women to join our pre-study research project exploring the views of Māori and Pacific women on endometrial cancer microbiome research.
This research is being carried out by a group of health professionals and researchers from the Māori Health Pipeline Team, within Te Whatu Ora – Health New Zealand. Your participation will be vital to advancing our understanding on how we best carry out future research in this field.

We want to understand your experiences of your recent healthcare journey and your views on research we would like to do in the future about Endometrial Cancer. We may talk about topics like taking swabs, samples, blood tests and storing tissue from reproductive areas (the womb and vagina). Your views will inform future research that is culturally responsive. Most notably, you will contribute to advancing women’s health care in our communities. 

 

 

This video will tell you a bit more about what to expect when considering taking part in the Endometrial Cancer Microbiome Pre-Study.

 

Why are we doing this research? 

Our research is inspired by a groundbreaking American study that discovered a link between the microbiome of the uterus and endometrial cancer. Specifically, it identified the presence of a bacterium called Porphyromonas somerae (P. somerae). Here in Aotearoa, our Endometrial Cancer Microbiome Study aims to further investigate the presence of P. somerae in women to see if it can be used as a marker for detecting endometrial cancer. 

The microbiome consists of a community of microorganisms, including bacteria, that reside in different parts of the human body. Sometimes, changes in the microbiome can lead to disease, including cancer. By understanding these changes, particularly in the uterus and vagina, we aim to identify endometrial cancer earlier and more accurately. 

 

Why is it important? 

Endometrial cancer rates are rising globally. In Aotearoa, Māori wāhine are two times, and Pacific women are six times more likely to be diagnosed than other populations. Unfortunately, Māori and Pacific wāhine also face higher death rates. Although obesity, diabetes, and menopause play roles, they don’t explain everything. 

This reality highlights the critical need for research that is not only scientifically rigorous but also culturally sensitive and aligned with Māori and Pacific worldviews, which is why we are conducting the pre-study. By listening to your voices – Māori and Pacific women who are most affected – we can tailor our methods to be more inclusive and effective. Your insights will help us shape the direction of future endometrial cancer microbiome research.  

We hope this research will support future developments of a screening test. Such a test would be a significant milestone, potentially transforming the early detection and treatment of endometrial cancer for Māori and Pacific women. Through this work, we hope not only to improve health outcomes but also to forge a path of medical research that truly reflects and serves the needs of our communities. 

 

Who can participate in the pre-study? 

If you meet the following criteria, we warmly invite you to join our study: 

  • Identify as a Māori and/or Pacific woman
  • Are aged 18 years or older
  • Live in the Auckland region

 
In the past 12 months, you have: 

  • Undergone a hysterectomy due to endometrial cancer or for any other health reason.
  • Are currently being treated or have been treated for abnormal bleeding issues.

 

What is involved? 

The Participation Process: 

Our study team will initiate contact with potential participants to provide detailed information about the pre-study and answer any questions.

You can access our participant information sheet here. Participant Information sheet English and Te Reo versions.

 

Interview Details 

If you agree to participate, we will schedule a kōrero or talanoa, which can be done in person or online via Zoom.  

In the interview, you’ll be asked various questions about your health experiences and endometrial cancer research. Some topics might be sensitive. You can pause, skip questions, or end the interview anytime. We’ll also offer a list of support services available to you. 

You’ll be invited to discuss: 

  • Your healthcare experiences and treatments.
  • How you prefer to give and receive information?
  • Your views on our sample collection and storage methods.
  • Ideas on how we should enquire about your nutrition and diet.

 

Additional Support 

Interviews can be conducted in your preferred language, with interpreter services available. You are welcome to have a support person with you during the interview. 

Afterwards, you can request a summary of the results, and we can organise a hui for a face-to-face presentation with you and your whānau.  

Expect full results by mid-2024.

 

Contact Information 

For further information, please contact:  

Roimata Tipene, Research Manager   

Email: Roimata.tipene@waitematadhb.govt.nz  

Phone 021 415 266

 

Frequently Asked Questions 

Can I bring a support person? 

Yes – you are welcome to bring along your whānau, family or support person(s) to the interview.  

Will my GP find out the results? 

This is a qualitative research study– no study data will be released to your GP or healthcare providers unless required by law. The results of the study will be anonymised. This means that none of the data collected will be able to be linked back to you and your privacy can be upheld. 

Who will interview me? 

A member of the Endometrial Cancer Study Team will conduct your interview. We have several female interviewers from a range of ethnicities and ages. Photos of the interviewers are included on your Patient Information Sheet – you may request for a specific team member if you have a preference.   

How do I get to an interview? 

If you choose to have your interview at one of the interview locations provided, when your interview has been confirmed, a member of the study team will arrange transportation for you to the interview location. If you are driving, directions to the location will be provided. If you would prefer, we can also arrange a taxi service to pick you up and take you home (at no cost to you). You can discuss these options with the study team at any time.  

Will it cost me? 

There is no cost to you to participate in this study. In recognition of your time, a voucher (koha) will be provided – and your transport and/or parking will also be covered for both you and your support person(s).  

Do I need to bring anything? 

No need to bring anything except your support person if you would like to have them present. Water and light refreshments will be provided – please let us know if you have any special dietary needs.  

How did you get my details? 

For our research, we are interested in speaking to women who:  

  • Are a Māori and/or Pacific women aged 18 years or older 
  • Reside in Auckland 
  • Within the last 12 months have; 
  • Had a hysterectomy related to endometrial cancer OR another reason 
  • Are currently having tests after seeing a doctor for bleeding

 

Your specialist/clinician has referred you to our study as being eligible based on these criteria. You do not have to participate in this study if you do not want to.

Participation is completely voluntary and will not affect your medical care or treatment.  

Why do you want to interview me, I don't have cancer? 

We are interested in speaking Māori and Pacific women from three separate groups:  

  • Group one are women who have had a hysterectomy within the last 12 months related to endometrial cancer.

The last two groups are not directly related to an endometrial cancer diagnosis:  

  • Group two are women who have had a hysterectomy in the last 12 months for non-EC reasons.
  • Group three are women who are currently having or have had treatment in the last 12 months for abnormal uterine bleeding (AUB). 

We hope that women in these groups will share their experiences with the health system and views on how we can best inform future endometrial cancer microbiome research.   

What is biobanking?  

Biobanking or tissue banking refers to the process by which samples of bodily fluid or tissue are collected for research to improve our understanding of health and disease. 

Biobanks are secure facilities that host a collection of donated patient tissue samples as well as relevant clinical information regarding these samples to support ethically approved research.  

In our Endometrial Cancer Microbiome Research, participants undergoing a hysterectomy (surgical removal of the womb) will be asked for their consent to provide tissue and blood sample for biobanking. These samples will be treated with the utmost care and respect and securely transported and stored in a biobank facility located within Aotearoa New Zealand. Some of these samples may be preserved for use in future research.