The Newborn Screening (NBS Connect) patient registry serves as an internet-based support network for parents, guardians and individuals with inherited metabolic disorders (IMDs). NBS Connect captures and analyzes information related to IMDs in an effort to assess gaps in service, access to care and to develop best standards of practice for clinical management and connect families to research opportunities. NBS Connect strives to improve the quality of care of individuals with IMDs.
Registering with NBS Connect and completing a Profile connects you to the latest news and information about inborn errors of metabolism and current clinical trials/research studies and allows you to learn more about the community. Registering also gives you access to information about care and treatment; genetic testing and nutritional services and enables us to tell you about upcoming research studies for which you may qualify.
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The Professional Portal is Here!The patient registry is now available to qualified researchers and clinicians. Theprofessional portal provides resources such as access to a qualitative de-identified database for future research, and care and treatment strategies used by NBS Connect participants. Help us promote the importance of registering on NBS Connect to your patients.Click here to register as a professional.
Start a topic of interest or join the discussions already in progress. The discussion forum is a great way to connect with other registered participants. Click here to get started.
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A Health Resources and Services Administration (HRSA) supported partnership