Current Research on Endometriosis: An Interview with Dr. Cecilia Ng

“I think at the end of the day, it’s trying to help make the patients’ lives better. One of the things I learned is that if we help make the women, trans and gender-diverse people in our society better, everything and everyone around them works and functions better.”

Teresa Götz: Hi Dr. Cecilia Ng! Could you introduce yourself for us?

Dr. Cecilia Ng: My name is Cecilia. I’ve been working on endometriosis since about 2007. I did my PhD in the field and then I went on to do a postdoc continuing this work and on stillbirths. After that, I worked in a pharmaceutical company for about four years before returning to research to this role to establish the National Endometriosis Clinical and Scientific Trials Network, NECST. Which arose from the Australian National Action Plan on Endometriosis, back in 2018. As part of that work, I’ve been working with a broader team across Australia to set up the NECST registry. We’ve got several projects going; one of those is the Indigenous work that we’re doing with Donna Ciccia, our master’s student.

Teresa Götz: How did you come to research endometriosis in the first place?

Dr. Cecilia Ng: It was very random. I did not know what endometriosis was, all those years ago. I was working as a research assistant before I started my PhD. Through that, I made connections with people from an immunohistochemical company called Dako. They produce antibodies and are experts in machines to do immunohistochemistry. One of their technical and scientific experts worked in a group within the women’s health, obstetrics, and gynecology department at Sydney University. Through them, they offered me a PhD, which was how I learned about endometriosis. It was very random. I had no idea what endometriosis was when I first started.

Teresa Götz: What fascinates you about the topic that you have been in now for a long time?

Dr. Cecilia Ng: I think the complexity, which is also a bit of a curse. Sometimes it can feel like you are hitting your head against the wall, with the many facets of endometriosis. Everywhere you look, there’s something that is not quite right or needs a little bit more research to understand it a little bit better. The more we delve into it, the more questions we come up with. I think at the end of the day, it’s trying to help make the patients’ lives better. One of the things I learned is that if we help make the women, trans and gender-diverse people in our society better, everything and everyone around them works and functions better. That’s why I’ve kept within the women’s health space all these years.

About Dr. Cecilia Ng

Dr. Cecilia Ng is a researcher and clinical trials network manager working in Australia. She has been involved in endometriosis research since 2007. Currently, she focuses on building a clinical and scientific trials network in Australia to streamline research efforts. She is working on various research topics and is optimistic that collaboration between researchers and patients can bring meaningful benefits on both sides.

Teresa Götz: It’s very important for the whole society. What would you say is the greatest challenge in the field of endometriosis at the moment?

Dr. Cecilia Ng: Oh, the complexity; it’s two sides of the same coin. The complexity is what is really fascinating about it. The most challenging part of it is trying to bring it all together. Being able to take a step back and have a look at the overall picture of endometriosis. Trying to understand it from the patient’s perspective as well is quite challenging at the moment because there is so much variability in terms of their experience. We’re getting a lot of different responses in the patient space at the moment because of their different experiences and how long it actually takes to diagnose.

Teresa Götz: You have done a lot of research since 2007. Could you explain the study you presented and then maybe give a broader insight into your work?

Dr. Cecilia Ng: Sure! The work that I presented at the World Congress is the work of our master’s student, Donna Ciccia. She’s been interested in understanding the experience and the prevalence of endometriosis in indigenous communities within Australia. There is a big knowledge gap that was also identified in the Australian National Action Plan on Endometriosis. It’s something that she was very, very passionate about. But before we could go into trying to find out what the prevalence is, we took a step back to find out about their understanding of menstruation, women’s health, and their access to care in general. Because we need their help to identity ways to work work with them and understand what they need to understand about menstruation and endometriosis, and generally women’s health, better.

There’s still a stigma, even though the general population has some level of understanding of periods, pain and related issues. We’re starting to talk about it more. But the stigma is still attached to it requires more understanding what the barriers and enablers are for in the Indigenous population. That’s where we went with Donna’s project and her scoping review to understand that a bit better. With the broader work that I’m doing, we’ve established a clinical and scientific trials network across Australia. It’s trying to bring a lot of interested clinicians, researchers, allied health professionals, policy makers, and patient advocates into one space. We realized that there wasn’t very much funding in endometriosis research for a number of years, and all of the groups that were interested and well known within the endometriosis research area in Australia were working in silos. By establishing a clinical and scientific trials network, we can hopefully bring everyone together. Because we will have the power in numbers and that’s what we were aiming for.

Hopefully, we can make the research we do and the results and publications stronger by the fact that we have much higher recruitment numbers. As, participants are recruited and the data is entered in a similar fashion and thus consistent. That’s why we then developed the NECST registry with which we’re hoping to move into the next phase, where we’re looking at supporting the early and mid-career researchers in this space, and everyone is really pumped. There are a lot of ideas going around. Arising from not just what we’ve done to establish the network, butthe National Action Plan on Endometriosis has also helped others to drive their research in this space.

Teresa Götz: You combine your forces and your resources, and then you can use them in the best way. It sounds really great. I also want that for Germany.

Dr. Cecilia Ng: That’s what we were hoping to achieve. We’re getting there. There’s still a lot of work to do. There is a lot of hard work to enter data into a registry and it is because there’s a lot of information that goes into trying to get meaningful results. But some of the initial analysis we’ve done to look at what we currently have in our registry is quite fascinating. Looking at those who have come through with single surgeries, those who have come through with a recurrence, the different types of endometriosis that they present with, and the differences between recurrence and their initial first surgery. It’s a fascinating data set to be able to play with.

Teresa Götz: What are your future research goals? Working with the same database or something else?

Dr. Cecilia Ng: We’re trying to make the user experience a little bit better with our registry. There are a couple of little things that have arisen during our first version. We’ve made a number of little changes along the way, but there are a few more that have come through to try and look at more open-ended questions. Particularly about their experience related to the pain they feel, how long it takes to get a diagnosis, plus a couple of other things where we realized we should have allowed skip questions. Particularly questions about hysterectomy. It’s those little enhancements. We’re trying to improve the user experience for clinicians as well, and having a bit more of an integrated database that can hopefully help generate operation reports. Then we’re streamlining that further so it will allow the clinicians entering data something back at the same time.

As I was saying earlier, we’re going to try to strengthen and support the early and mid-career researchers because we know with the next generation coming through, we want them to be passionate about the research. We have to get them set up with a mentoring program as well.

Teresa Götz: It’s often not easy to be a researcher. You have to get funding and you have to have patients and work for a long time on big projects. I think it’s very important that young researchers get some help. Also, I think with the registry it’s the same as with the Endo-App. The idea can be good, but you have to make it easy to use otherwise people will give up on it.

Dr. Cecilia Ng: That is exactly it. We’ve already made a couple of enhancements, so now participants get one questionnaire all the way through, which they can still stop in-between, rather than receiving separate emails for each different questionnaire. That makes it easier. It has stopped some of the missing data that we were getting before because people were filling in some questionnaires, but others not. They sometimes thought it was the same one again. Our IT vendors have been quite helpful in that respect.

Teresa Götz: Could you explain how the registry can improve the lives of women, trans and gender-diverse people with endometriosis in the long term?

Dr. Cecilia Ng: We established the registry because we want to understand what is going on with endometriosis patients in the long term. Not only do we collect baseline data, but we also collect follow-up data at six months, at 12 months, at 24 months and yearly. It’s an ongoing interaction until they say “stop”, and if they want to withdraw, that’s not a problem. What we want to do, is to have that data collected so we know what they are going through. We want to be able to collect this information for years to come (funding dependent of course!). There is some longitudinal data and research going out there already, but some of it is anecdotal as well. We have limited longitudinal good data that is collected in a consistent manner.

One of the things we want to do with the registry is to understand what their experience looks like. Our cohort doesn’t have an upper age limit, so it’s anyone over 18. Most datasets I know generally have a cut-off age of 45 or 50 years, depending on the study. We don’t have that upper age limit, so that anyone can participate. We can then find out about those that are in menopause, either because of a hysterectomy or naturally. Hopefully, we’ll get that information so we can start to look at what is happening with them as well.

Teresa Götz: What do you think about digital self-help, for example through apps like the Endo-App?

Dr. Cecilia Ng: I certainly think it’s a really good idea because it is something that they have on their phones. They don’t necessarily need to go to a particular place because we all have limited time. My fear though is that it is becoming quite a crowded space in terms of the number of apps that are starting to come in. I’ve noticed a number of groups presenting the apps they’ve developed. Also, the transparency aspect – how is the data being used and collected? What kind of data is being collected, and is it comparable with other datasets that are collecting data similarly?

Another concern I have is how to ensure that the patients will be entering data and interacting with the app continuously. Some will play with it only once if they are not reminded to stay and that’s it. The app then sits on their phones unless they’ve got a real reason to interact with it. Those are some of the things that I have noticed.

One of our research collaborations , is exploring the quality of health apps within this space. I’ve been working with Diksha and Beck from the University of Adelaide on the work that they’ve been doing, particularly a systematic review of health apps. One of the things we noticed, was that, depending on the location of where that app originated, it may or may not have been available in Australia. You couldn’t get access to it in some way because there’s a geolocation lock, or security feature, or a limitation to it. That was one of the other things that was quite interesting to know about.

Teresa Götz: That’s also a concern for us. For now, the Endo-App is only available in Germany because it is in German. But maybe some German-speaking people live abroad can’t access it then. I think it’s an emerging matter we have to find a solution for. However, is there anything else you would like to share with those affected by Endometriosis?

Dr. Cecilia Ng: Keep working with us. Working together is the only way that researchers can help them find solutions and hopefully determine the outcomes that will give them a better quality of life. But have a bit of patience with us too. Research doesn’t happen overnight. There are a lot of processes. It can take a while to get to a place where things are functioning and you’re getting meaningful data. Also, how much data to collect, how to analyze it, and assess how meaningful it is – all of that can take time, and there are various administrative processes depending on what ethics you are asking for, or what kind of research questions you have. Have patience with us, but we want to work with them, to share our work and the results we come up with. Hopefully we can keep helping to improve the lives of those with endometriosis.

Teresa Götz: Thank you very much for this nice interview.

Dr. Cecilia Ng: That’s okay. You’re very welcome.

Teresa Götz
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