The World's Largest Genetic Study of PPD: PPD ACT
Do you ever wonder why some moms get postpartum depression and others don’t?
Do you wish there were more targeted treatments available that could work better and faster (!!) for moms with postpartum depression, anxiety or psychosis?
SO DO WE.
That is why Postpartum Progress is so proud to be the US consumer partner for a groundbreaking new international maternal mental health research project called PPD ACT™. Will you join maternal mental illness sufferers and survivors from around the world to change the face of PPD research? Get ready to change the future for moms with perinatal mood and anxiety disorders.
What is PPD ACT?
PPD ACT is an international research study that will do two things:
- Through an iPhone app, gather information from women who are currently experiencing or have experienced maternal mental illness. This includes postpartum depression, postpartum anxiety and postpartum psychosis. (Other methods of accessing this app, such as Android, will become available in the future.)
- Gather DNA samples from some of those women to look for specific genetic markers for postpartum depression and related illnesses.
The idea is that if specific genetic markers can be found such information could lead to future prevention of PPD and/or better and more targeted treatments for PPD. This is a monumental project — we’re seeking to get at least 100,000 women from around the world to participate.
If we reach our participation goals, this will be the largest amount of data ever gathered about moms who get postpartum depression, anxiety and psychosis.
Who is leading this research?
The PPD ACT study is being led by the University of North Carolina, in partnership with research institutions around the world including the Queensland Brain Institute at the University of Queensland in Brisbane, Australia and National Centre for Mental Health at Cardiff University in the UK. Other project partners include Apple, the National Institute of Mental Health, and Postpartum Progress.
How do I participate in PPD ACT?
It doesn’t matter whether you had a maternal mental illness six years ago, or 14 years ago, or have one right this very second: If you have ever had postpartum depression, postpartum anxiety/OCD or postpartum psychosis, you can participate. It also doesn’t matter whether you received an official diagnosis from a healthcare provider or you believe after the fact that you definitely had PPD or a related illness based on what you experienced; you can participate either way.
The information you share will be kept confidential, and there is no cost to participate in this study. (Note: As with the use of any mobile phone app, you may experience data use charges from your cell service provider.)
There are 5 easy steps to follow:
Step 1 – Go to iTunes and download the app PPD ACT. You can use this app on your iPhone and iPad devices. (It is not yet available in Android.) The app is free.
Step 2 – First you’ll be given some information about this research study and important things you need to know about being part of research in general. You’ll also be asked some basic demographic questions, like whether you are older than 18 and thus eligible to participate. Then you’ll be required to electronically sign a consent form showing you understand the project and want to be part of it. (If you’d like to review the consent form in advance, you can find it here.)
Step 3– Next, you’ll be asked some questions about what your experience with perinatal mood or anxiety disorders is or was like. Answer fully and truthfully based on what it felt like at the time you were going through it. This information will help the researchers understand the variety of symptoms and experiences women go through when they have maternal mental illness.
Step 4 – Depending upon your answers to the questions in step 3, you may be asked to join the international genetics study. This will involve being sent a DNA kit, completing the instructions in the kit once you receive it — Hint: It involves spitting into a test tube. Simple and fun!! — and returning that kit at no cost using packaging provided to you.
Step 5 – Share, share, share!!! Ask other women you know who have had maternal mental illness to participate. Even if you don’t think you know someone who has had PPD, let your circles know since you never know who around you may have struggled as a new mom too. It’s going to take a lot of moms doing a lot of sharing to reach our goals!! We can’t do this without all working hard together to make it happen.
What about my privacy?
Researchers will use a code number to identify you and your DNA sample if you are asked to provide one. This means they’ll have your information but they won’t know who you are or be able to identify you. Before you are asked any personal questions or asked to provide any DNA samples, all of the privacy related issues will be explained to you in detail by the app so that you can understand exactly how your information will be used and then you get to decide whether you feel comfortable moving forward.
How will I be able to keep up with what is happening with the study?
You will receive updates every so often from the app, but we’d love for you to join us on a specific PPD ACT Postpartum Progress newsletter list so that we know if you’re on of the Warrior Moms who has joined the study and so we can keep you updated ourselves!
What if I don’t have an iPhone or iPad?
For now, the only way to participate in PPD ACT is by using the PPD ACT app available for iPhones and iPads. This study is happening in part because of a partnership with Apple that allows PPD ACT researchers to use Apple’s Research Kit platform. Still, the researchers are looking into additional ways to include a wide and diverse set of participants in the PPD ACT study, and Postpartum Progress is as well. We feel strongly, of course, that all women who have experienced perinatal mood and anxiety disorders should be able to participate in some way, and we’ll keep you updated as more ways become available.
One way the team already is working to increase access for moms who don’t have iPhones is by donating iTouch devices to select perinatal clinics in the United States for use by patients during office visits. If you run a perinatal mental health clinic that serves underserved women and would like to request an iTouch device so that your clients can participate, please reach out to firstname.lastname@example.org.
Why isn’t this available in Canada?
It very likely will be in the future, and when that happens we can let you know if you sign up for our PPD ACT mailing list below. 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 saying they want to participate. Other countries have also expressed interest in participating, so we will let you know whenever another country gets added to the project.
Why isn’t this available for Android users?
For now, the study is available on iPhone and iPad only, but the study team is working on other access points for those who don’t have Apple products. We’ll keep you posted as soon as new information is available on that. We’re hearing from lots of moms who have Androids and want to participate and we’re communicating all of your messages to the lead researchers.
Will this app be available in other languages?
A Spanish language version of the app is on the way. If you have recommendations of other languages that you’d like to see us add, please let us know at email@example.com.
Why can’t moms participate who’ve had depression or anxiety during pregnancy but not postpartum?
In the first stage of development of the PPD ACT study, the researchers decided to focus on the postpartum period only because the science to date indicates that is the time of peak prevalence of symptoms and because of specific hormonal and genetic factors. They do, however, plan to expand the study in the future to include pregnancy onset symptoms. This is just a start.
How can I share this study with other moms?
Funny you should ask! Below is a Twitter update you can easily share by clicking “Click to tweet” in the bottom right-hand corner.Ever had #postpartum depression/anxiety? Join #WarriorMoms in the groundbreaking worldwide #PPDACT study!… Click To Tweet
This app and research study is also supported by:
The Foundation of Hope, which is dedicated to promoting scientific research aimed at discovering the causes of and potential cures for mental illness in hopes of developing more effective means of treatment.
Little Green Software, a full-service app development firm that developed the app.
UNC School of Medicine Center for Innovation, which evaluates and supports the adoption of disruptive, patient-centered innovations in the delivery and financing of health care.