It took only two menstrual cycles for Noémie Elhadad to know something wasn’t right with her body. Growing up in a family of doctors and women with endometriosis, the then 13-year-old was soon diagnosed with the condition herself.
Now, 27 years later, Elhadad, Ph.D., a biomedical informatics professor at Columbia University in New York City, is using her professional and personal experience to revolutionize a type of app most women already have on their phones. The Citizen Endo project – a creation of Elhadad and her team at Columbia Medical Center – revolves around Phendo, a period tracking app that focuses on tracking pain, and citizen science.
Endometriosis, also known as “endo” by those familiar with the disease, is a chronic condition where tissue similar to the lining of the uterus is found outside the uterus. This tissue most often adheres to the outside of the reproductive organs but can also be found anywhere within the pelvic cavity including the bladder, bowel, peritoneum, as well as higher up on the intestines and diaphragm. Changes in hormone levels lead to an inflammatory response around the areas of endometriosis which can cause widespread pain in areas affected, as well as pain during intercourse, urination and/or bowel movements. It may also lead to infertility. Despite its prevalence – around one in 10 women have the condition – little is known about the disease.
“In a way, the fact that the disease has not been well studied is an opportunity here because the field is wide open,” Elhadad told The Mighty.
“We can really do something.” Despite the multitude of apps available, period trackers are far from one-size-fits-all. Today’s period trackers don’t really consider endometriosis, Elhadad said. Many trackers revolve around estimating fertility for the purpose of planning or avoiding pregnancy. While these analytics are important for many women, fertility-based trackers fail to recognize the large population of women who are infertile – many of whom rely on trackers as a way of monitoring conditions like endometriosis or polycystic ovarian syndrome (PCOS). For the 5 million women in America who have endometriosis and the 1.5 million who are infertile, these brightly designed apps with their fertility-inspired imagery often fall short of the community’s needs.
Phendo, which stands for “phenotyping endo,” will be the first period tracker of its kind on the market. “[Endometriosis] is different from other diseases in the sense that it really affects everything in your daily life,” Elhadad said. Therefore, the Phendo app will allow each woman to customize its settings to best suit her pain and symptoms.
Building the Citizen Endo Team
It took Elhadad a while to commit herself to such a personal project. “It was not an easy decision, actually,” she said. “It came out of both opportunity – I have the skills and the expertise to do data science and mobile health and things like that – and just as a patient feeling an unmet need. We still don’t have enough descriptions of the disease that are directly connected to the patient experience.
” Along with Elhadad, the Citizen Endo team includes Mollie McKillop, M.S. in public health, M.A., a third year Ph.D. student and “endo advocate;” and Sylvia English, M.S., who, like Elhadad, has endometriosis.
“I got my first period at 13 and didn’t know there was anything wrong,” English said. “[At 15,] I was regularly passing out at school and couldn’t really stand up most of the time… I was officially diagnosed when I was 22 and have had three surgeries. I’m trying to use this experience to make things better for people somehow. ”
It’s no coincidence that two-thirds of the Citizen Endo team has endometriosis. “[Having endometriosis] changes our perspective and motivations as well,” Elhadad told The Mighty. “You’re motivated for yourself, but you also want to help as many women who experience something similar to what you’ve been through, to prevent other people from having to go through it again.
” The team has been consulting women with endometriosis since day one. “We’re making sure patient voices and women with endometriosis are actually heard while building this,” English said.
This idea of doctors and researchers listening is not typically a part of an endometriosis patient’s experience. “To me, that’s what sticks out about endo,” Elhadad said. “People get left behind and they don’t get heard.”
The team also works with three nurse scientists who specialize in self-management, health literacy and women’s health.
Creating an App for Researchers and Patients
The Phendo app, created using Apple’s ResearchKit and CareKit, is a pure research initiative financed by funding Elhadad receives as a researcher at Columbia Medical Center. Citizen Endo does not accept any commercial or pharmaceutical funding.
Phendo’s goal is three-pronged.
“One is understanding the disease,” Elhadad told The Mighty, “having a full account of the constellation of symptoms and signs that can happen with the disease.
” Once the app hits the market later this fall, Elhadad and her team hope to learn more about how the disease develops and changes. “We already know, thanks to all of the research that happened before, there is at least three subtypes of endometriosis and those have been found through surgery mostly,” Elhadad explained. “It’s endometrioma or superficial lesions of endometriosis or it’s deep-infiltrating endometriosis.
” Now the team wants to know how each subtype affects symptoms, and if there are more subtypes within each type.“There are some questions we don’t know how to answer yet,” Elhadad said. These questions include who develops infertility and why do some patients respond to treatments while others don’t. The app will hopefully find answers through clinical and surgical data as entered by the user.
“The next steps are really to have a set of biomarkers and digital markers for endometriosis,” she said. “So a lab test is a biomarker, but the way the number of steps you take today because of the terrible pain of your cycle, that’s also a marker of endometriosis.
” The second goal of the app is to help users determine and manage what triggers their pain as well as see how their symptoms have developed over time. “There’s this opportunity for each woman to make sense of her own data as well and to figure out what works and what doesn’t work,” Elhadad said.
Through tracking you can start to see bigger trends in the data. “You can start to see what works for you as an individual and what doesn’t,” English explained. “That’s important from the individual level, but it’s also really great to see [for example] there’s this cluster of women and they’re taking xyz drug and it makes their pain really bad three days later. What does that mean in the long-term and maybe they’ve got another trait we can look at that will signify there is something we can do to intervene.
” Lastly, Phendo strives to promote citizen science with the app’s users acting as patients and scientists. “In the design itself of the app there are mechanisms for women to say ‘I have this question about endometriosis,’ or ‘I think this worked for me, does it work for others,’” Elhadad told The Mighty. “So it’s not only your a citizen because you are donating your data, it’s because you are actually thinking about it and hopefully in an empowering way and not in a way that depresses you about your disease.”
Right now Elhadad and her team are finishing the design and beta testing the app with users. “My hope is by September or October we have a minimum viable product that can be tested at scale,” she said. The app will be available to anyone who has surgically been diagnosed with endometriosis as well as those who think they might have the condition but have yet to be diagnosed.
“We also have a selected set of subjects where we know what particular diagnosis they have and which phenotype they have so we can correlate that to the data,” said Elhadad. “We’re kind of running two studies at once, basically.
” Phendo already shows promise. “It’s been really fascinating to see there’s already a pattern happening between what’s going on in the morning versus what’s going on at night,” Elhadad said of tracking her own symptoms through the app. “I didn’t know, even though I’ve clearly been thinking about it for so long. So I’m even learning something from tracking it this way.” You can visit the Citizen Endo website to learn more about Phendo and be notified when the app launches.