Congenital adrenal hyperplasia is a rare condition that affects how the adrenal glands produce hormones. The condition affects boys and girls equally and can lead to a variety of symptoms that require expert medical care from multiple pediatric specialists.
Riley at IU Health provides comprehensive care for this condition through the Congenital Adrenal Hyperplasia (CAH) Program. Riley offers all the care your child needs in one location, allowing your child’s doctors to collaborate seamlessly. Our expert pediatric urologists and pediatric endocrinologists work together to identify and treat CAH using the latest medical and surgical techniques.
Surgeons at Riley at IU Health are leaders in the surgical care of girls with CAH. Our surgeons developed new techniques to repair genital anomalies that have now become the international standard of care. We also strive to stay on the forefront of research to ensure our patients have the best outcomes possible.
Riley at IU Health doctors have received national recognition for high-quality care of congenital adrenal hyperplasia. Riley has been designated a comprehensive care center (CCC) for patients with CAH by the CARES Foundation, the premier organization for CAH education, research and support. It is one of four designated centers in the country and the only one located in the Midwest.
Our pediatric specialists provide patient- and family-centered care for most related conditions. The links below provide more specific information about some, but not all, of the conditions that we treat.
Pediatric specialists at Riley at IU Health provide comprehensive treatment options for congenital adrenal hyperplasia.
In addition to our primary hospital location at the Academic Health Center in Indianapolis, IN, we have convenient locations to better serve our communities throughout the state.
The Congenital Adrenal Hyperplasia Program at Riley at IU Health provides the following forms for parents, healthcare providers and personnel. We have also curated relevant resources from other websites and provided links with brief descriptions of the information that is available.
The CARES Foundation provides support for families of children with congenital adrenal hyperplasia. The foundation also promotes advocacy, education and research efforts to improve care for the condition.
We provide multispecialty care for a number of conditions. Below are links to our related departments.
For more information about our CAH Comprehensive Care Center at Riley, or to schedule a consultation, please contact the nurse program coordinator at 317.412.1206.
NCT#: NCT03525886
This is a Phase 2* study to determine dose levels and the safety of a new add-on drug (NBI-74788) for classic Congenital Adrenal Hyperplasia (CAH). This medicine is an extra medication for patients with CAH, so patients who participate in the study will continue their maintenance glucocorticoid and mineralocorticoid doses during the study. We are signing up male and female patients who are 18 to 50 years old and who have classic (21-hydroxylase deficiency) CAH. Each dose is given for 14 days in a row.
*Phase 2 clinical studies determine whether a new treatment is effective after a Phase 1 study determined it is safe.
Primary Investigator: Erik Imel, MD
Research Coordinator: Marian Hart, Missy Coffman, 317.948.8346
NCT#: NCT03257462
This is a Phase 2* study to establish doses and safety of new add-on drug (SPR001) for classic Congenital Adrenal Hyperplasia (CAH). This medicine is an extra medication for patients with CAH, so patients will continue their maintenance glucocorticoid and mineralocorticoid doses during the study. We are signing up male and female patients with classic (21-hydroxylase deficiency) CAH.
*Phase 2 clinical studies determine whether a new treatment is effective after a Phase 1 study determined it is safe.
Primary Investigator: Erik Imel, MD
Research Coordinator: Marian Hart, Missy Coffman, 317.948.8346
NCT#: NCT03687242
This is a Phase 2* study of a new drug (SPR001) for the treatment of classic Congenital Adrenal Hyperplasia (CAH) that provides 12 weeks of open-label treatment for eligible patients. This is an add-on medication for patients with CAH, so participating patients will continue their maintenance glucocorticoid and mineralocorticoid doses during the study. We are signing up male and female patients with classic (21-hydroxylase deficiency) CAH.
*Phase 2 clinical studies determine whether a new treatment is effective after a Phase 1 study determined it is safe.
Primary Investigator: Erik Imel, MD
Research Coordinator: Marian Hart, Missy Coffman, 317.948.8346
