INTERIM SUPPORT FOR THE DS CONNECT ONLINE REGISTRY

Investigators

Abstract

The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH) is soliciting support services to maintain and continue a System of Record (SOR) to support one online study registry, DS-Connect® that contains personally identifiable information (PII) and includes a responsive-template website and professional portal, all of which are Section 508 compliant in accordance with HHS regulations (https://www.hhs.gov/web/section-508/). The SOR will reside in the cloud and adhere to a Federal Information Security Management Act (FISMA)-moderate level of security controls. These support services will also include working with NIH/NICHD staff to transition this registry data to a successor contractor within this 6-month period of extension and export of deidentified data to the INCLUDE Data Coordinating Center Data Hub twice per year. Research Data Patient Registry (RDPR) The NICHD awarded a contract in September 2012 to create and maintain an online registry named DS- Connect®: The Down Syndrome Registry, which was subsequently housed in a SOR known as the Research Data Patient Registry (RDPR) and contained PII. This contract was recompeted in 2015 (adding in the creation and maintenance of the PregSource® registry) and again in 2018. The RDPR is currently hosted on the Amazon Web Services (AWS) cloud, and houses two online registries: • DS-Connect®: The Down Syndrome Registry (https://dsconnect.nih.gov/), and • PregSource®: Crowdsourcing to Understand Pregnancy (https://pregsource.nih.gov/). This registry is being discontinued with its data migrated to the NICHD DASH resource by August 2023. Each participant in DS-Connect is given a Global Unique Identifier (GUID) generated based on PII elements. This allows information to be combined between data sources or biospecimen repositories by matching to the GUID without revealing PII. This contract is to provide interim support for the DS Connect Online Registry during the Six-Month Extension of services for contract Number: 75N94020F00276 to provide continuity of operations and support transition from August 28, 2023, through February 27, 2024.