Your Story Could Shape the Future of Endometriosis Care: Inside the NECST Registry

Every person’s experience of endometriosis is different. That’s part of what makes it so hard to diagnose, so hard to treat, and so often misunderstood. But it’s also exactly why your story is one of the most powerful research tools we have.

In this episode of Living with Endo, host Ellie Angel-Mobbs sits down with Dr Cate Broomfield, clinical psychologist, senior research associate, and part of the team behind the National Endometriosis Clinical and Scientific Trials (NECST) Registry. Together they unpack what the registry is, why it matters, and how something as simple as signing up could help change the future of endometriosis care in Australia.

What is the NECST Registry?

The NECST Registry is a nationwide clinical database built by patients, medical professionals and researchers working together. Its purpose is simple but ambitious: to collect information from as many people living with endometriosis as possible, so researchers can learn from the full range of real-world experiences.

Because no two endo journeys look the same, the more stories the registry can gather, the easier it becomes to spot patterns — the things that are similar and different across thousands of people. Those patterns are what help answer the big questions the community keeps asking: What causes endometriosis? And how can we manage it better?

Why it matters

For years, endometriosis research has been scattered. Different teams, chasing different questions, all asking people to give up their time again and again. The result? Survey fatigue, and a lot of duplicated effort.

The NECST Registry is designed to change that. Instead of contributing to a dozen separate studies, you contribute once and approved research groups can then draw on that shared, anonymised data. It means more high-quality research, with far less burden on the people generously giving their time.

As Dr Broomfield explains in the episode, this “centralising” of endometriosis research is quietly one of the most important shifts happening in the field right now.

What actually happens when you sign up?

The registry collects things like basic demographic details, information about your symptoms and how they affect your life, the treatments you’ve tried (surgery, medical management, allied health), and how those treatments play out over time.

Following people over one, two, five, even ten years is how researchers learn what genuinely helps. And through it all, your identity stays anonymous. Researchers only ever use the specific information a study needs.

Research that’s already making a difference

You may have noticed that a couple of endometriosis medications have recently become more affordable through the Pharmaceutical Benefits Scheme — including Visanne (dienogest), listed in late 2024, and Slynd, added in the 2025 update. For a condition that had gone decades without a new subsidised treatment, that’s a genuine milestone.

Dr Broomfield points to changes like these as exactly the kind of real-world impact that research can help drive. And with the registry still early in its life, she’s hopeful there’s much more to come.

Why your story matters

Endometriosis is deeply personal. For many, past experiences of being dismissed or brushed off by healthcare providers make it hard to open up again. Others simply worry they’re “too busy,” or that their data won’t make a difference.

And then there’s a surprising one: people who’ve had a good outcome, who presume they no longer have anything useful to offer.

Dr Broomfield’s response to that is one of the most powerful takeaways of the whole conversation — and it’s a big reason to press play. (Here’s a hint: the success stories might matter just as much as the hard ones.)

Good research takes time

If it sometimes feels like research findings take forever to reach the community, there’s a reason. Funding, study design, recruitment, running the study, analysing the data, publishing, sharing it back. Each step alone can take months.

But as Dr Broomfield puts it, when we’re talking about people’s health, we don’t want to rush it. We want results we can actually trust. The NECST Registry is helping cut down the burden and speed things along, without cutting corners.