In the fall of 2000, NIH established its first Pediatric Rheumatology Clinic with the aim of achieving a broad and vitally important mission. The clinic provides assessment, diagnosis, and treatment for children enrolled in an NIH study who are diagnosed with or suspected of having a rheumatic condition. It also serves as a health education center, providing evidence-based information on the signs and symptoms of rheumatic diseases along with tips for managing these conditions. For physicians, the clinic offers exposure to and training in the subspecialty of pediatric rheumatology. Finally, by enrolling patients in ongoing clinical trials, the clinic contributes to the understanding of the causes of rheumatic diseases in young people.
In addition to this comprehensive focus, the clinic covers a diverse set of interrelated conditions. The clinic is open to patients dealing with any of more than 100 rheumatic diseases, which are defined as those involving inflammation of muscles, joints, tendons, ligaments, bones, and skin, as well as to young people who have received diagnoses for multiple conditions. Currently, the clinic has studies under way on juvenile idiopathic arthritis, juvenile systemic lupus erythematosus, and periodic fever syndromes, including neonatal onset multisystem inflammatory disease (NOMID).
The symptoms and progression of rheumatic diseases are often markedly different in children than in adults, presenting challenges to the diagnosis and management of these chronic conditions. To meet the medical needs of young patients and support a robust portfolio of research studies, the clinic employs a wide range of health professionals in addition to pediatric rheumatology fellows, including nurse practitioners, pediatricians, and research nurses. These staff members work closely with referring physicians to inform them about treatments being provided at NIH and to ensure continuity of care when patients return home. The clinic’s staff also relies on the expertise available through other components of the NIH Clinical Center, sending patients to the Department of Radiology and Imaging Sciences to assess joint damage and visualize inflammation, or to the Department of Rehabilitation Medicine to improve mobility and restore muscle strength, when necessary.
Although the focus of the Pediatric Rheumatology Clinic is broad, the diseases it addresses are varied, and the services it provides are diverse, the clinic has a unified purpose: improving the lives of children living with rheumatic diseases. In addition to the small group of young people who receive direct care, the research being conducted at the clinic may lead to better diagnostic tools and more effective interventions and, eventually, to reducing the number of children and families affected by pediatric rheumatic diseases.
For more information, call the NIAMS Information Clearinghouse at 301–495–4484 (direct) or 877–22–NIAMS (226–4267) (free of charge).
To find out if a child is eligible for a clinical study, call the NIH Patient Recruitment Office at 800–411–1222 (TTY 866–411–1010).
From NIAMS IR Partners newsletter Spring/Summer 2009