Principal Investigators:
Terry Sanger, MD, PhD & Warren Marks, MD

Executive Committee:
Anne Koy, MD; Jean-Pierre Lin, MD; Warren Marks, MD;
Jonathan Mink, MD, PhD; Terry Sanger, MD, PhD; Lars Timmerman, MD

What is the PEDiDBS Registry? 

The PEDiDBS is a registry of prospectively and retrospectively-collected data intended to foster collaborative research on topics related to the use and outcomes of deep brain simulation (DBS) in the pediatric population. 

Why do we need it?

DBS was introduced late 1990s for Parkinson’s disease and essential tremor. In 2003, DBS therapy received initial approval in Europe and Humanitarian Device Exemption (HDE) approval in the U.S. for managing the symptoms of dystonia. Today less than 1000 pediatric patients have been implanted.  As even the most experienced centers have only around 100 patients, there is an international consensus that organized data sharing is important to appropriately develop and understand the role for this technology in pediatrics. Collaborative efforts have been made to develop an international registry for the last several years aiming to build a collaborative network in order to share information on this highly complex, low-volume procedure.

How do I get started?

Please contact us for more information or a user name and password to the Participating Sites Page. There you will find all of the information that you need to get started.