July 29, 2022 | Office of the President & Chief Research Officer
Stanley Manne Children’s Research Institute
President’s Message
As I return to the importance of “research as a team sport,” I would like to highlight Manne Research Institute as an incubator and catalyst to expand and evolve our teams to pursue answers to society’s pressing health questions. Sometimes our teams tackling complex health problems through science and research have the additional challenge of navigating the national debate about health and wellness. Yet, the arduous work of these teams is critical to understanding the problems and making informed personal and policy decisions. Specifically, I want to highlight the resilience of our researchers focused on improving the health outcomes of transgender, gender expansive, and gender non-conforming children and adolescents.
 
Under the guidance of Robert Garofalo, MD, MPH, the Division Head of Adolescent and Young Adult Medicine at Lurie Children’s, a dynamic, multidisciplinary team of experts has built an internationally renowned research program. Collectively, they have overcome systemic, societal barriers to gender research while generating new science to inform and improve the care and treatment of children and adolescents.
The work of the Gender Development Program is as diverse as it is impactful. The program’s founding pediatric psychologist, Diane Chen, PhD, is breaking ground in fertility preservation for the program’s patients, while also leading a first-of-its-kind fellowship program to train clinical and research psychologists in transgender health. Gender-affirming medical and surgical interventions have implications for long-term fertility potential, and collaborations with the Fertility Preservation and Hormone Restoration Program at Lurie Children’s and the reproductive endocrinology team at Northwestern University have positioned our gender program to lead research efforts related to fertility preservation among transgender youth populations. As a result of that research, Lurie Children’s can offer established and experimental fertility preservation interventions, such as sperm, egg, and gonadal tissue cryopreservation. NIH funding also supported Diane and her team in developing a digital decision aid to support patient and family decision-making about fertility preservation.
In the realm of public health, Lisa Kuhns, PhD, MPH, is a Research Associate Professor who is currently funded by an NIH U01 grant to explore HIV prevention in transgender women, a population with some of the highest rates of HIV incidence and prevalence in the United States and globally due to health inequities rooted in discrimination and lack of access to health services. Over the last decade, Lisa and her network of collaborators have emerged as pioneers in developing and testing interventions to reduce HIV acquisition and transmission risk among young transgender women. Most recently, they have employed a randomized trial of a psychoeducational and skill-building mobile app among 5,000 young transgender women across the country to help prevent the acquisition of HIV.
While we celebrate the Gender Development Program as a national leader in the field and one of the many teams distinguishing Lurie Children’s and Manne Research Institute, we cannot take for granted how far it has traveled from its inception. Early in his career studying transgender health, Robert faced pushback from funders and science publishers related to biases and prejudices about the communities he was investigating. When he started at Lurie Children’s more than 20 years ago, Robert was the only person doing clinical work in this area. Today, the Gender Development Program encompasses multidisciplinary faculty and staff from across Lurie Children’s and Manne Research Institute, including physicians, public health experts, pediatric psychologists, nurses, and social workers. I was intrigued to listen to a deep dive into the roots of Robert’s research and clinical practice in a recent episode of the Breakthroughs podcast. Robert credits the team for playing a seminal role in the evolution and advancement of transgender healthcare and shares my enthusiasm for the wide range of research expertise they bring to the program.
 
What does the future hold for children and adolescent gender identity development? With her focus on psychology, Diane hopes for more research on how to help the transgender community thrive, while Lisa envisions equitable access to and improved uptake of HIV prevention information and treatments. Robert sees opportunities for investigations of genetic and biological outcomes in transgender care as he leads the first-and-only NIH-funded prospective study of an adolescent cohort taking gender-affirming hormones as part of their transition—an R01 that is a collaboration between Lurie Children’s and three other institutions. The goal is to follow these individuals across their lifetimes to learn about the long-term effects of taking these hormones.
 
The pursuit of research that is grounded in science, and policy that is informed by evidence, has never been more important. Let’s continue to advocate for research that will in turn provide us with the best evidence and clinical practices to improve transgender healthcare.
See also: Evidence-Based Gender-Affirming Care for Young Adults with Robert Garofalo, MDBreakthroughs Podcast, Northwestern University Feinberg School of Medicine
Patrick C. Seed, MD, PhD, FAAP, FIDSA
President & Chief Research Officer
Stanley Manne Children’s Research Institute
Children's Research Fund Chair in Basic Science
Director, Host - Microbial Interactions, Inflammation, and Immunity (HMI3) Program
Professor of Pediatrics, Microbiology & Immunology
Northwestern University Feinberg School of Medicine
Ann & Robert H. Lurie Children’s Hospital of Chicago