What is a Registry

What is a Patient Registry?

A patient registry is a collection of standardized information about a group of patients who share a condition. The information may be used for a variety of purposes such as conducting natural history studies and supporting disease specific clinical trial recruitment.

IAMRARE video on "What is a Registry" by NORD

What is the purpose of the FGFR Syndromes Research Registry?

The purpose of the FGFR Syndromes Research Registry is to bring the FGFR Syndromes community together and collect data.
Some of the goals of the FGFR Syndromes Research Registry are:

• To describe the people who have FGFR syndromes and to better understand the stages of the disease and the different ways the disease affects people. To do this, we will ask about diagnosis, treatment, medical history, social and economic environment, and treatment outcomes.
• To understand how FGFR syndromes change over a person's lifetime and to learn about clinical practice patterns and variations over the course of treatment.
• To help to develop best practices, management guidelines and recommendations so that clinicians can know how to give the best care to improve the quality of life and outcomes of people with FGFR syndromes.
• To find a correlation between phenotypes (characteristics of a person) and genotypes (the specific gene mutation). This will help patients/caregivers better prepare for their medical journey and what questions to ask their doctors.
• To identify people with FGFR syndromes who might be willing to take part in other research studies or clinical trials. You will be able to choose whether you want to hear about these other studies.

Why are Registries Important"
Video from Dr. Cory M. Resnick, MD, DMD at Boston Children's Hospital

Video by Janet Woodcock, Former Director CDER FDA on NORD Registry Program