The Children's National Health System is doing its part in trying to make the world a better please for rare disease patients. This week, they announced the creation of the Children's National Rare Disease Institute (CNRDI), a facility that will focus on advancing the care and treatment of children and adults with rare genetic diseases.
CNRDI will perform multiple duties such as developing standards of care for patients with rare diseases while also advancing rare disease research. The ultimate goal is to help patients. It will look to improve the life span and quality of life of patients.
The geneticists at CNRDI will use systematic data models that track patient outcomes and treatment regimens to create an ever-expanding clinical knowledge base. The institute will look to eliminate patient care gaps by providing training specific to rare diseases for clinicians, genetic counselors, nurses, researchers and allied health professionals.
CNRDI was designated as NORD’s first Center of Excellence for Clinical Care for Rare Diseases, and they will be in collaboration NORD’s natural history/registry program, developed with input from FDA and the National Institutes of Health (NIH), to advance monitoring databases for patient outcomes and disease.
THe CNRDI is being led by Marshall Summar, MD, chief of genetics and metabolism at the hospital. Dr Summar is also the current Chairman of the Board at NORD.