GAPPS 2013 Annual Letter
Over the past seven years GAPPS has grown from an idea into a significant contributor in maternal, newborn and child health advocacy and research, and this year we are issuing our first annual letter to share with you some of the promising milestones from 2013 and what we are looking forward to in the year ahead.
First, the bad news and the reason we do what we do
In 2013, more than 15 million babies were born prematurely, and more than 1 million of them did not survive infancy. Three million babies were stillborn around the world, leaving families devastated and oftentimes not knowing what went wrong.
The good news
GAPPS and other global health organizations are making significant progress in advancing research and raising awareness and funding for preterm birth and stillbirth.
Collaboration drives our work. We bring people from different fields together to generate innovative approaches to understanding pregnancy, preterm birth and stillbirth. We advocate for evidence-driven treatment, but know that ultimately, prevention is key.
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Preventing Preterm Birth Initiative
The Preventing Preterm Birth initiative (PPB), a Grand Challenge in Global Health funded by the Bill & Melinda Gates Foundation and administered by GAPPS, seeks to discover biological mechanisms that lead to preterm births and develop novel interventions to prevent them. This year, two additional research projects were funded, in addition to five that were announced in 2012. These cutting edge research projects have brought together some of the best minds in preterm birth research, as well as attracted scientists from other fields, and promise to yield critical discoveries in the quest to understand and prevent preterm birth.
We have also received proposals for international pregnancy cohort sites that will allow researchers to study the high burden of preterm birth and stillbirth in low- and middle-income countries, and develop therapeutics and interventions that can be used in those settings. In the coming months we will announce which sites will be funded through the PPB.
National Children’s Study
GAPPS’s Scientific Director, Mike Gravett, MD, was selected to lead the Perinatology Working Team for the National Children’s Study effort to develop pediatric terminology. Under his leadership, the team is developing standardized terms and definitions for pregnancy and adverse pregnancy outcomes. The National Children’s Study will examine the effects of the environment, as broadly defined to include factors such as air, water, diet, sound, family dynamics, community and cultural influences, and genetics on the growth, development, and health of children across the United States, following them from before birth until age 21 years.
Our Perinatal Interventions Program developed an innovative healthcare solution aimed at improving birth outcomes in low-resource communities and healthcare clinics. It combines decision-making tools with low-cost, evidence-based interventions to enable healthcare providers in low-resource settings to diagnose at-risk women and quickly identify and implement appropriate solutions to manage preterm birth, birth complications, or direct effective care for preterm newborns.
GAPPS investigator Maureen Kelley, PhD, received the Caroline Miles Visiting Scholarship from Oxford University to be a visiting scholar in the Ethox Center for Ethics in the School of Public Health in the fall of 2013. She also worked with parents from the Stillborn Still Loved Guild to organize a session at the University of Washington School of Medicine to help the next generation of doctors better address the bereavement needs of families after a stillbirth.
Click here for a list (pdf) of publications from all GAPPS staff in 2013.
It was a banner year for our pregnancy biobank—the GAPPS Repository—as we easily eclipsed the 1,000 primary participant milestone and also became part of a $7.4 million grant from the National Institutes of Health to researchers at Virginia Commonwealth University. The study uses data and specimens from 600 GAPPS Repository participants to analyze the maternal and neonatal microbiome to assess its role as a cause of preterm birth.
We also saw significant interest in the GAPPS Repository from researchers around the world, and distributed specimens and data to more researchers than ever before. Our team also produced more than 8,000 specimen collection kits for a University of Oxford study researching fetal growth.
It’s encouraging to see the Repository fulfilling its mission by enabling more researchers to study what causes preterm birth, stillbirth, and other pregnancy complications, and we expect continued growth in 2014.
A solution pathway and a new coalition
GAPPS partnered with the Bill & Melinda Gates Foundation, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, and the March of Dimes Foundation, to publish “A solution pathway for preterm birth: accelerating a research agenda” in Lancet Global Health. In addition to laying a roadmap for addressing the burden of preterm birth, the article outlines a new coalition focused on advancing visibility and research:
“The opportunity exists now to generate new knowledge and solutions that can move rapidly to health gains. To this end, BMGF, GAPPS, MOD, the US National Institutes of Health, and WHO have initiated efforts to forge a new coalition to advance the visibility and research needed to drive global change. The coalition is intended to be inclusive of other key stakeholders, inviting participation of governmental and multilateral organisations, foundations, and corporations that support research into maternal-newborn health and are committed to an accelerated agenda to reduce death and disability due to preterm birth. Finding solutions to the complex problem of preterm birth will not come easily, but will need an expanded strategic initiative. Time and again results have shown that investment in science yields health solutions. Now is a crucial time to effect such advancements for preterm birth.”
- Lackritz et al, Lancet Global Health, Vol. 1, No. 6, Dec. 2013
Every Newborn Action Plan
Senior Program Officer Eve Lackritz, MD, is helping develop an Every Newborn Action Plan, which will take forward the United Nations Secretary General’s Global Strategy for Women’s and Children’s Health by focusing specific attention on newborn health and identifying actions for improving their survival, health and development. The plan is being developed by a diverse group of stakeholders, led by WHO and UNICEF, and guided by the advice of countries and experts. Our external affairs team is working closely on the advocacy and communications strategies to make sure the plan has the greatest impact possible.
GAPPS takes an active role in helping advance shared goals through some important organizations, including the Global Health Technologies Coalition, the Frontline Health Workers Coalition, and the Global Health Council. Through these groups, organizations are able to come together and amplify our voices, advocating for mothers and children around the world – many of whom are not in a position to advocate for themselves.
We also partner with the Stillborn Still Loved Guild and Tiny Footprints Guild to produce awareness and fundraising events and to advocate to local leaders on issues pertaining to preterm birth and stillbirth.
Changing public perception
GAPPS worked with members of both guilds to make a video from the perspective of parents of stillborns. Born in Silence went viral in October after being featured on Upworthy and Huffington Post, and now has more than 120,000 views. It has prompted an outpouring of stories from people who have experienced a stillbirth but in many cases felt it was too taboo to discuss. In addition, GAPPS has been featured in a number of high profile news stories, including in USA Today, Reuters, ABC News and Yahoo! News, about the need for more research into preterm birth and stillbirth.
We have also partnered with an upcoming feature film called Return To Zero, which stars Minnie Driver and Paul Adelstein, and is based on the true story of a successful couple who are preparing for the arrival of their first child. Tragically, just weeks before their due date they are devastated to discover that their baby son has died in the womb and will be stillborn. The movie’s mission is to break the silence around stillbirth and promote understanding and healing.
2013 was a momentous year at GAPPS, full of progress and expanded horizons, and it wouldn’t have happened without the partnership of the donors, families, advocates, and peer organizations that we work with every day. We deeply appreciate your commitment to preventing prematurity and stillbirth and look forward to building on this momentum and making even more progress in 2014.
If you would like to make a tax-deductible gift to support our work, you can do so here.
Craig E. Rubens, MD, PhD
Global Alliance to Prevent Prematurity and Stillbirth (GAPPS)