National Down Syndrome Registry, Built and Administered by PatientCrossroads, Launches Professional Portal and Receives NIH MERIT Group Award

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DS-Connect®: the Down Syndrome Registry is a secure, free resource for the entire Down syndrome community

PatientCrossroads, which administers and built DS-Connect®: the Down Syndrome Registry for the National Institutes of Health (NIH), has launched a portal for health professionals with an interest in Down Syndrome. The Professional Portal makes the de-identified data collected by the registry available to scientists, health care providers, members of Down syndrome organizations, industry representatives, research foundation members, and other qualified professionals interested in Down syndrome.

DS-Connect® is a centralized registry resource to better understand the health characteristics and needs of people with Down syndrome. Through the Professional Portal, de-identified registry data can be used to develop research projects and plan for clinical trials, while still protecting the privacy of the registry participants. The Professional Portal can also be used to determine study feasibility or to recruit for clinical trials and research studies. PatientCrossroads will work with NIH and the Down Syndrome Consortium to ensure that physicians and other clinicians, researchers, pharmaceutical companies, and foundations have access to the de-identified patient information. NIH has established a DS-Connect® Research Review Committee to oversee access and use of the registry data in a manner that protects the interests and privacy of the participants.

The public-private Down Syndrome Consortium—established in 2011 and made up of seven NIH institutes and more than a dozen advocacy and research organizations—provided input into DS-Connect®, which was funded by the NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). For their efforts in developing a national resource, PatientCrossroads and NICHD employees were awarded the NIH MERIT (Method to Extend Research in Time) Group Award in 2013.

“As the leading provider of patient-centric registries, PatientCrossroads was able to help the NICHD and the Down Syndrome Consortium achieve its goals of a single, shared information hub for people with Down syndrome where participants can connect with researchers,” said Kyle Brown, founder of PatientCrossroads. “We are honored by the NIH recognition of the DS-Connect®, and we look forward to continued expansion of this first national registry for individuals with Down syndrome.”

The registry for Down syndrome is based on PatientCrossroads’ proven patient registry platform, able to collect data on any disease, from the most rare to the most common. In the PatientCrossroads system, individuals are engaged with their data, opting in and consenting to share their de-identified medical information.

To join the registry, or to find out more information, go to the DS-Connect®: the Down Syndrome Registry web page.

About PatientCrossroads
Since 2005, PatientCrossroads has pioneered the use of patient registries to accelerate therapeutic development and empower patients. PatientCrossroads registry programs connect patients with researchers, advocates and industry organizations working to understand or treat specific diseases and conditions. Dedicated to openly accessible registry programs, PatientCrossroads has been recognized for its efficacy through national and international awards and partnerships. Its groundbreaking CONNECT patient registry platform allows de-identified patient information from multiple diseases to be shared and used to research diseases, find new treatments, and better educate and support patients and their families. For more information, visit http://www.patientcrossroads.com.

For more information, contact:
Kyle Brown, PatientCrossroads
kyle(at)patientcrossroads(dot)com
+1 (650) 678-8929

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Kyle Brown