It would have really helped if I had known all of my risk factors ahead of getting postpartum anxiety. Maybe that whole hell could have been prevented. I mean, what if someone had said to me, “You have a high likelihood of getting this, so let’s teach you about it and make sure you know what to do and make sure we take good care of you and have a team around you just in case.” Or, what if instead of it taking me AN ENTIRE YEAR!!!! (YES, I’M YELLING) to find the right medication for me, I could have found one right away and gotten better a whole lot sooner?
We know a lot about perinatal mood and anxiety disorders like PPD, yes. But do we know enough? It’s pretty easy to answer that question with a resounding no, because if we did know enough so many moms wouldn’t still be suffering endlessly.
It’s a good thing, then, that some pretty cool people from across the globe are coming together to try and do something about it, starting today. Postpartum Progress is unbelievably proud to join the University of North Carolina School of Medicine, the Queensland Brain Institute in Australia, the National Centre for Mental Health at Cardiff University in the United Kingdom, Apple (yes … that Apple!), and the National Institute of Mental Health in launching PPD ACT™.
What is PPD ACT? It’s an international research study that uses a free iOS app—an app you can get on Apple iTunes for your iPhone or iPad—to gather data from moms who’ve had PPD. And anxiety. And psychosis. All moms. Any mom. If you had it 14 years ago, like me, you can join. If you’re in the midst of it right now, you can join. If you received a diagnosis from a doctor, you can join. If you didn’t but still had the symptoms of PPD, anxiety or psychosis, you can join.
PPD ACT is an Apple ResearchKit app. ResearchKit is an open-source framework developed by Apple that allows researchers to create app-based studies with global reach. Women in the U.S. and Australia can begin using PPD ACT today, and the UK version of the app is coming soon. The study was developed by Samantha Meltzer-Brody, MD, MPH, director of the Perinatal Psychiatry Program at the UNC Center for Women’s Mood Disorders and Patrick Sullivan, MD, director of the UNC Center for Psychiatric Genomics, and will be run by them in partnership with the international PACT Consortium.
So what do you do? Just download the PPD ACT App at the iTunes store, read the information about the study, consent to the study if you want to participate, and answer questions about your experience. That’s phase 1. Easy peasy.
Phase 2 is a genetics study to find the genetic makers for PPD. Depending on the information you shared in phase 1, you may be invited to share your DNA. Don’t worry; there are no needles! We’ll send you a DNA “spit kit,” you’ll spit into a test tube, you’ll ship the test tube back in the packaging provided, and the researchers will use your DNA and that of thousands of other women to find more answers about maternal mental illness. You won’t pay for a single thing. Not the app. Not the spit kit. Not the postage or shipping. Nothing. Also easy peasy, plus spitting for science!!
When we say thousands of women, we mean THOUSANDS. The goal is to get more than 100,000 moms from around the world to participate. If we meet this goal, it will be the largest study and the largest amount of data ever gathered of moms with PPD.
This is HUGE. MONUMENTAL. And it’s going to take work. Postpartum Progress’ motto is “together, stronger.” We have always believed that the voices of the women who have gone through this matter, and that if we all come together we can make sure moms in the future don’t have to struggle as we did. We can make sure our daughters never have to feel alone and defective and filled with shame as new mothers. WE can do something about it.
So here’s your chance, ladies. Join us. Imagine how powerful this can be if we all come together.
For any questions you have, read more about our how we’re participating with PPD ACT, find great images to share on social media, and answers to other questions you might have at this time. We know you’ll have some and we’re here to answer them for you. We hope you’ll share this with all moms in your life so we can reach that goal and find answers to the questions about postpartum depression so more mamas can be helped.
Thank you for being part of our community. You matter.
Is there an option for Android users?
I’m wondering this too
I’m curious too. I would love to be a part of this study.
For now, the study is available on iPhone and iPad only, but the study team is working on other access points for those that don’t have Apple products. We’ll keep you posted as soon as new information is available.
This is awesome! How about Canada?
Hi Susan! Great question. The app/study very likely will be in Canada in the future. Each country has its own rules for medical research, so first some Canadian academic research institutions need to decide to take on this project in Canada and then they’ll have to seek and receive the country’s ethics board approval for conducting such research. Postpartum Progress has no power over that process. We have, however, let the chief researchers know how many Canadian moms have reached out to us saying they want to participate. Hopefully it will spur those in Canada to move this project forward quickly!
I’ll definitely participate if Canada jumps into it!
I will as well.
I would love to participate but, I have an Android. Is there anyway for those with Android to participate?
For now, the study is available on iPhone and iPad only, but the study team is working on other access points for those that don’t have Apple products. We’ll keep you posted as soon as new information is available.
So excited for this! Thanks for sharing, Katherine! I will share on my mommy blog as well–the more women we can empower to get involved, the better. So excited to hear about this!
I have an android too. I would love to participate.
For now, the study is available on iPhone and iPad only, but the study team is working on other access points for those that don’t have Apple products. We’ll keep you posted as soon as new information is available.
Last I checked, the android operating system has around 8x the market share of iOS across all devices. Do you need help porting it to Android?
I was very excited to see the Lobbying activities when PSI announced them. Yay! Melanie Blocker Stoker Act in 2010 expands and grows. Love it.
wow!!! Gotta love how technology is changing things!! I’m seated here, wondering, hoping, praying this gets to Kenya some day…
While at it, great job Katherine. This was the first site I stumbled on the day I typed ‘Why do I hate my baby so much’ and it marked my turning point. so grateful to have made strides (and blogging about them over at ppdisland.wordpress.com) – Thank You!
Its kind of stunning that it only allows people with Apple products to participate. I’m surprised they didn’t start with a more inclusive product if they’re wanting to reach such a large number of women. Especially since Apple is such an exclusive company. I wonder if it might even skew the data given that Apple products are often used by people of specific demographics. Its kind of infuriating. I hope this is fixed soon.
Kimberly, we have all of this in mind and completely understand what you are saying. We are working hard on this for many reasons. Thank you for your input, and bear with us as we leap through some hoops to make this as inclusive and easy as possible for everyone!
PPD runs in my family but I’ve never had children, can I offer my DNA?
Sara, thank you for your willingness, but yes, it has to be someone who has had it. Thank you!
I don’t have an apple, is there something for android?
Not yet! We’re working on it!