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Jan. 15, 2015

TOPIC: Research

Registries for Rare Diseases: Involve the Patient

Posted by Jennifer Huron

In a new interview with Medscape, Marshall L. Summar, chief of genetics and metabolism at Children’s National Medical Center in Washington, D.C. and NORD marshallboard member, talks about the importance of patient registries for rare diseases, and the role that NORD’s patient registry program has in helping patients and educating doctors.

According to Dr. Summar, registries can accelerate the process of treatment and help physicians address the big knowledge gap about what happens in the day-to-day lives of patients.  By better understanding what is happening with rare disease patients, “we can develop better therapies by understanding the comorbid conditions and the long-term consequences of rare disease…  Try to get your patients with rare diseases enrolled in registries. You will learn more. Your patients will learn more, and it will actually be easier to take care of them. You will have access to information that you might not otherwise have.”

To learn more about or sign up for NORD’s patient registry program, read the FDA blog post written by  Dr. Janet Woodcock, director of the FDA Center for Drug Evaluation and Research, or visit the NORD Registry Platform information page.