A-T Clinical Center at Johns Hopkins Hospital
In 1995, the A-T Children’s Project established and funded a multidisciplinary clinical center at Johns Hopkins Hospital in Baltimore, Maryland to focus solely on the evaluation and treatment of patients with ataxia-telangiectasia. This center provides a centralized clearinghouse for information about management strategies so that doctors in the U.S. and around the world do not need to struggle with A-T in a vacuum.
Dr. Howard Lederman & Dr. Tom Crawford with Elliott
The team of physicians includes specialists in immunology, neurology, pulmonology, swallowing, nutrition, physical therapy and adaptive services. An A-T family may typically visit this center every two or three years for a one-day protocol to fully evaluate the patient’s condition. Of course, whenever an A-T patient’s condition becomes critical, the clinic can immediately use its experience with A-T to assist the home physician in designing a treatment.
The A-T Clinical Center is important to A-T research as well, as clinical experience always assists scientists in devising new research strategies. In addition, as potential therapies are developed, having a medical center with natural history data and a patient base already in existence makes the implementation of clinical trials much easier.
The A-T Clinical Center at Johns Hopkins Hospital (600 N. Wolfe St, Room CMSC 1102, Baltimore, MD) always welcomes collaborations with researchers that will move us closer to life-improving therapies and a cure for A-T. Researchers are encouraged to contact Director Howard M. Lederman, MD, PhD and Sr. Research Nurse/Clinic Coordinator Jenny Wright, RN.
Make an Appointment at the Clinical Center
Clinic Coordinator: Jenny Wright, RN
Direct: 410-614-1922
Toll-free in the USA: 800-610-5691
jwrigh58@jhmi.edu
Director: Howard M. Lederman, MD, PhD
Phone: 410-955-5883
Fax: 410-955-0229
hlederm1@jhmi.edu
Accomplishments
Since its establishment, the A-T Clinical Center has made significant progress in defining the symptoms of A-T, developing guidelines for best practices and identifying areas in need of further research.
- Identified dysfunctional swallowing with aspiration as a critical cause of pulmonary disease
- Developed tools for assessing the long-term neurological deterioration of A-T
- Described a relatively common problem of dysgammaglobulinemia that may have important implications for understanding the immunologic perturbations of A-T
- Defined growth abnormalities in children with A-T with the aim of developing a hypothesis for their cause
- Looked at the relationship between vitamin A levels and lymphopenia in children with A-T — a study undertaken because vitamin A deficiency is a common factor linking growth failure and lymphopenia
- Identified a new hazard to older individuals with A-T: the development of progressive central nervous system vascular abnormalities
- Collected and analyzed data on the difficulties with cognitive performance that A-T patients face as they age
- Published more than twenty papers in peer-reviewed, scientific journals including a state-of-the-art paper on pulmonary disease and A-T and a study of safety and caregiver satisfaction with G-tube placement for A-T