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Upstate Active Clinical Trials

Study Title:

Spina Bifida National Registry

What is the purpose of the study?

The purpose of the project is to test the use of a standardized registry tool to collect data about spina bifida in children birth to 25 years of age. The data collected will ultimately be transmitted to the CDC and used to establish a national database of information about children with spina bifida, to learn more about the condition and its outcomes, to improve care, and to identify areas of future research. Your name will not be shared with the CDC. A Spina Bifida Patient Registry is a collection of information about people with spina bifida and their condition. This study is conducted as part of a multi-site study in which all participants, including yourself, will be asked information requested in the Spina Bifida National Patient Registry. If you do not know certain information, we will check the medical record or talk to your doctor. The Spina Bifida National Patient Registry Forms will be utilized to collect, record, and transmit required information to the CDC. All data will be de-identified before being transmitted to the CDC.

Upstate Institutional Review Board (IRB) Number:


Patient Age Group:


Principal Investigator:

Nienke P Dosa

Who is eligible?

We are interested in collecting health care data of individuals with spina bifida, as a means to gather information related to spina bifida for the purpose of improving the care.

Who can I contact for more information?

Name: Kimberlee M Garver
Phone: 315-464-7519
Email: garverk@upstate.edu

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