Registration

Why Join Newborn Screening Connect (NBS Connect) Patient Registry?

NBS Connect and Clinical Research

A key goal of the NBS Connect Patient Registry is to assist clinicians, pharmaceutical companies and researchers in developing new clinical trials and studies for NBS inherited metabolic disorders (IMDs). By searching the registry, study investigators can identify subsets of participants with the characteristics needed for study planning or recruitment. NBS Connect is also available to review draft recruitment notices for research on behalf of the IMD community, and post product advertisements on the registry website.

Registry Data and Curation

De-identified data gathered from self-report participant profiles is made available to the NBS Connect community of registered participants, families, medical care providers and researchers, 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 will soon begin curating the clinical and genotypic information submitted by each participant. Curation is an ongoing and continuous process; however, searches of the registry will include all curated and uncurated data provided by participants. Specific details of curation can be discussed with NBS Connect, and may be used to refine such searches. Only completed participant profiles are included in searches of the Registry database.

Professional Support and Educational Resources

NBS Connect provides resources to clinicians, researchers and other professionals to educate their patients about the diagnosis, inheritance, genetic testing, medical care and management of NBS disorders, as well as general information about participating in clinical trials. Metabolic dietitians are available to help professionals provide information on diet management and locate resources.

Links to disease specific parent organizations are offered, and recipes analyzed by registered dietitians with nutrient information are featured monthly.

Registration


Please complete the form below to request access to the NBS Connect research portal. Once approved, you will have access to graphs and charts representing all NBS Connect registrants. In addition, you will have the ability to download certain de-identified data sets as an Excel spreadsheet file.

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