The time that the doctors at the A-T Clinical Center devoted to us meant more to us than they’ll ever know. We felt their passion and their hope, and it was wonderful to hear that our child means as much to them as he does to us. Though we were complete strangers to the group, everyone treated us like a family.
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.
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.
Contact the A-T Clinical Center
The Johns Hopkins Hospital
600 N. Wolfe St.
Room CMSC 1102
Baltimore, Maryland 21287-3923
For an appointment, contact:
Jenny Wright, RN
Direct: 410-614-1922
Toll-free in the USA: 800-610-5691
jwrigh58@jhmi.edu
Director: Howard M. Lederman, MD, PhD
hlederm1@jhmi.edu
Phone: 410-955-5883
Fax: 410-955-0229
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.
The A-T Clinical Center has:
- 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.
Cancer Consultations WITH St. Jude
St. Jude Children’s Research Hospital, located in Memphis, Tennessee, is the world’s premiere center for research and treatment of potentially fatal childhood diseases, including cancer and certain blood, genetic and immunodeficiency disorders.
When A-T patients develop cancer, their local oncologists are encouraged to seek consultations from Dr. Richa Sharma at St. Jude.
Physicians seeking more information should contact Dr. Sharma at:
Email: Richa.Sharma@stjude.org
International A-T Clinics
Several countries have clinics that specialize in A-T. International clinics and contact information can be found on this page.