July 06, 2005
Institutional Review Board, Hospital for Special Surgery
The safety of our participants is our top priority. The trial/study is approved and periodically reviewed by the Institutional Review Board (IRB), which includes doctors, administrators, ethicists, and members of the general public. The safety of clinical trials is reviewed by the U.S. Food and Drug Administration.
Before enrolling in a clinical trial or research study, the investigator will explain the purpose of the trial/study, its expected benefits, any possible risks or side effects, and what your role will be. If you want to join the trial/study, you must sign informed consent documents. You can leave a trial/study at any time without penalty.
For further information, see Understanding Clinical Trials/Research Studies.
Jessica G. Davis, MD
Erin M. Carter, MS
Lorraine Montuori, LCSW
The Kathryn O. and Alan C. Greenberg Center for Skeletal Dysplasias is a center specifically dedicated to the comprehensive medical care of individuals with skeletal dysplasias. This registry is designed to track patients and use this information for future studies that will investigate the course of skeletal dysplasias and effective treatment. The System for Collaborative Translational Research (SCTR), an online database system, is used to collect and analyze all patient data. To date, we have enrolled approximately 40 patients. This registry is ongoing and will follow patients for an indefinite period of time.
All patients diagnosed with a skeletal dysplasia that are evaluated at the The Kathryn O. and Alan C. Greenberg Center for Skeletal Dysplasias and continue their care at HSS.
Principal Investigator
Cathleen Raggio, MD
The Kathryn O. and Alan C. Greenberg Center for Skeletal Dysplasias
Hospital for Special Surgery
535 East 70th Street
New York, NY 10021
Tel: 212.774.7332
Email: csd@hss.edu