Newborn Screening Test for Spinal Muscular Atrophy

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Newborn screening
Newborn Screening Test for Spinal Muscular Atrophy
United States of America
To facilitate collaborative development of a newborn bloodspot screening test to detect the genetic lesions that cause spinal muscular atrophy. The test will be designed to use in public health newborn screening laboratories.

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Sickle Cell Data Collection (SCDC) Program

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sickle cell disease
Sickle Cell Data Collection (SCDC) Program
California and Georgia, USA
United States of America
To build the framework for collecting data about individuals in the United States with sickle cell disease in order to monitor their health outcomes, evaluate current systems of care, and inform the development of a comprehensive care model to meet the needs of these individuals throughout their life.
Biogen; Pfizer Inc.; Global Blood Therapeutics
CDC’s National Center on Birth Defects and Developmental Disabilities
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CDC Foundation, Pfizer and CDC Partner to Develop Longitudinal Data Collection System for Sickle Cell Disease

The CDC Foundation is partnering with the U.S. Centers for Disease Control and Prevention’s (CDC) Division of Blood Disorders within the National Center on Birth Defects and Developmental Disabilities, the California Rare Disease Surveillance Program (a project of the Public Health Institute, located in Oakland, CA) and Pfizer Inc. to support the development and implementation of a longitudinal data collection system for Americans with sickle cell disease.

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