Research

The Kathryn O. and Alan C. Greenberg Center for Skeletal Dysplasias Clinical Research Registry

IRB Number: 23125

Institutional Review Board, Hospital for Special Surgery

July 06, 2005

The safety of study participants is our top priority. The trial is approved and periodically reviewed by an 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, the investigator will explain the purpose of the trial, its expected benefits, any possible risks or side effects, and what your role will be. This is the time to ask questions! If you want to join the trial, you must sign the informed consent documents. You can leave a clinical trial at any time without penalty.

For further information, see Understanding Clinical Trials.

Principal Investigator

Cathleen Raggio, MD

Co-Investigators

Jessica G. Davis, MD
Erin M. Carter, MS
Lorraine Montuori, LCSW

Summary

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.

Inclusion/Exclusion Criteria

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.

Contact Information

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



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