WHAT IS A PATIENT REGISTRY?

 

„REGISTRIES AND DATABASES ARE THE BACKBONE OF MODERN MEDICINE. THEY ALLOW US TO LEARN FROM THE EXPERIENCES OF MANY PATIENTS AND IMPROVE CARE FOR EVERYONE.“

A patient registry is a systematic collection of health data from patients, usually with rare diseases, used to improve research, treatment, and care. It allows doctors and researchers to identify patterns and trends in disease progression and management. This data helps assess the effectiveness of therapies and develop personalized treatment approaches—ultimately aiming to improve patient care.

GENETIC DATA AND INFORMATION ON THE CLINICAL PRESENTATION OF THE DISEASE AND THE QUALITY OF LIFE OF FAMILIES ARE COLLECTED THROUGH DIGITAL QUESTIONNAIRES. THE DATABASE IS SET UP USING THE REDCAP (RESEARCH ELECTRONIC DATA CAPTURE) SOFTWARE.

Here you will find our individual patient registries.

CONTACT PERSON:

Study Director:

Prof. Dr. med. Steffen Syrbe

Additional Members of the Registry Team:

Dr. med. Jan Henje Driedger
cand. med. Prisca Wille
cand. med. Kim Marie Thalwitzer
 

Contact Address:

Center for Pediatric and Adolescent Medicine
Section of Pediatric Epileptology
Epilepsy Diagnostics
Subject: Registry
Im Neuenheimer Feld 430
69120 Heidelberg

E-Mail: Epi-Register.Kind(at)med.uni-heidelberg.de 

A collaboration with Human Genetics Leipzig