PCRCD - Pediatric Center of Rare and Complex Disease

PCRCD focuses on fragile children with extremely complex medical conditions. Due to the rarity of these children's disorders, they often fall through the cracks of the current medical care system and are under-diagnosed and under-treated. As a result, they also consume a huge amount of health care costs due to multiple emergency room (ER) visits and hospitalizations. Our goal is to have these children achieve optimal health outcomes by decreasing the number of hospitalization and ER visits, reducing the number of school days missed, as well as reducing the number of work days missed for parents and caregivers. This would provide a significant improvement in the quality of life of these children and their families while substantially reducing medical and non-medical costs. We aim to accomplish our goals by facilitating early diagnosis and integrated care.

PCRCD directed by Dr. Harumi Jyonouchi, Associate Professor of Pediatrics, was established at UMDNJ-NJMS in July 2005, adapting the model system established by the University of Minnesota, U Special Kid program (USK), which she helped create. PCRCD is unique in that it has a laboratory component that distinguishes it from other programs that care for medically fragile children and is the only such program available in the state of NJ. This component has been instrumental in facilitating the diagnosis and therapeutic measures for the children enrolled in this program.

Since the establishment of PCRCD, the cost-effectiveness and the improvement of the quality of life of PCRCD patients have been demonstrated by substantial reduction of ER visits, hospitalizations, doctor's office visits (sick visits), medical tests and invasive procedures. Children who were spending greater than one third of the year in the hospital now have no significant hospitalizations and just 1-2 brief ER or planned visits.