Moms: Help needed for largest ever postpartum depression study

(CNN) — If you have ever suffered from postpartum depression or anxiety or know somebody who has, you no doubt have wondered what causes the destructive disorders that impact as many as one in five women. Why do some women experience them when others don’t? Could there be a way to predict who might suffer from them?

Answers to those vexing questions could come following the launch Monday of the largest ever study of perinatal mood and anxiety disorders, led by researchers at the University of North Carolina School of Medicine and the consortium Postpartum Depression: Action Towards Causes and Treatment. The international study is being conducted via one of the most popular tools in society today, the iPhone.

“We believe it’s a real game changer for our ability to understand the biologic causes of postpartum depression and postpartum psychosis and to use state of art science to develop innovative treatments, and that’s the overall goal,” said Dr. Samantha Meltzer-Brody, director of the perinatal psychiatry program at the UNC Center for Women’s Mood Disorders. “Our overall goal is to prevent anyone else from suffering with these devastating disorders, and we need to know more about the underlying biology, the genetic risk.”

Meltzer-Brody and her colleague, Dr. Patrick Sullivan, director of the UNC Center for Psychiatric Genomics, led the efforts to design not only the study, but a new free iPhone app, made available for download Monday, which women can use to take part.

After giving their consent to participate, women will answer the 10 questions from the Edinburgh Postnatal Depression Scale, which have been used for decades to diagnose perinatal mood and anxiety disorders.

Women will receive a score, which indicates whether they are or were suffering from mild to serious symptoms, and will be given referrals and resources for treatment. Those with scores above a certain threshold, meaning they suffer moderate to severe symptoms, will be asked if they are willing to participate in the genetic study, said Meltzer-Brody. If they are, they will be sent “spit kits” from the National Institute of Mental Health so they can provide a saliva sample.

Apple’s research app

The app, called the PPD Act app, is part of Apple’s ResearchKit, which was created by Apple to allow researchers to develop apps with a global reach. The app is available in the United States and Australia, and a British version will be available in the United Kingdom soon, said Meltzer-Brody. Plans for other countries are in the works, she said.

“This really represents the power of team science, and using the ability to use social media and smartphones and technology to reach people in ways that we haven’t been able to do so before,” she said.

The goal is to get 100,000 women from around the world to take part in the study, said Meltzer-Brody. To help get the message out, UNC has partnered with Postpartum Progress, a nonprofit organization considered one of the leading sources of information and support for mothers suffering from some form of mental illness related to childbirth.

“Our job is to inform, inform, inform, inform, and really help moms understand that they can be part of this and that it’s a way to contribute,” said Katherine Stone, the founder of Postpartum Progress, who battled postpartum depression and anxiety after the birth of her first child 14 years ago.

“We always say at Postpartum Progress that our job is to reach down and pull our sisters up. We will not leave any mom behind,” she said. “And so we want every mom who has ever had postpartum depression to participate in this, because it’s a way of contributing your story and contributing to the science that will hopefully provide more data for people who either develop medicines or develop other types of treatment methods.”

‘I did my civic duty’

After taking part in the study, Kimberly K. of Texas cheered on the Postpartum Progress Facebook page. “I love this. I felt like I was part of something really huge. I felt like I did my civic duty and voted. … Can we get stickers?”

The power of those words was not lost on Stone, a mother of two.

“All of those of us who’ve been through it and so full of shame and guilt, to have that mom say, ‘I did this. I put my official mark on this. I shared my information. If I got invited to, I will share my DNA,'” is fantastic, she said. “Hopefully, collectively together as mothers, we can help find an answer to this.”

Having the help and support of Postpartum Progress is critical, not just to spread the message through the organization’s worldwide reach, but also to let women know it’s OK to take part, said Meltzer-Brody. “There’s always a certain amount of suspicion as to what some university academic has cooked up,” she said with a chuckle.

Reaching women who don’t have iPhones

The biggest challenge of the study may be getting the survey to women in underserved, low-income communities, women who may not own an iPhone to download it in the first place.

To reach those women, researchers will be distributing iTouches to clinics around the country, 10 so far and counting, with institutions like the University of Arkansas, the University of Pennsylvania, Johns Hopkins University and Northwestern University committed to participate. When people come into the clinics, they can use the iTouch device to take the survey. “Spit kits” will also be on hand for women who are eligible to take part, said Meltzer-Brody.

The Foundation of Hope, which supports research into causes and potential cures for mental illness, is providing the financial support for the development of the app and the study.

Meltzer-Brody said the app would allow researchers to reach very large numbers of study participants from all walks of life, which would provide the clues to the underlying causes of disorders that not only impact mothers, but affect the development of children, too.

For women who have suffered from postpartum depression, the hope is the study will help identify those at risk, and help shorten the often lengthy time it takes to find medication that works for a particular illness.

“Obviously if there’s some way that we could minimally provide better and more targeted treatments for moms, that would be amazing,” said Stone of Postpartum Progress. “If you can take months or years off of a mother’s suffering, it not only improves her health. It improves her baby’s health.”

Have you or has anyone you know suffered from postpartum depression or any other mood disorder during or after pregnancy? Share your thoughts with Kelly Wallace on Twitter @kellywallacetv.