For Professionals

The National Institutes of Health (NIH), in partnership with leading Down syndrome advocacy groups and PatientCrossroads, has developed the DS-Connect® registry. DS-Connect® is a centralized registry resource to better understand the health characteristics and needs of people with Down syndrome. The purpose of the DS-Connect® Registry is to store health and other basic information about people with DS in a secure online format. DS-Connect® makes the de-identified data collected by the registry available to any scientists, health care providers, members of DS organizations, industry representatives, research foundation members, or other qualified professional interested in Down syndrome through the Professional Portal. This information can be used by Professionals to develop research projects and recruit for clinical trials, while still protecting the privacy of the registry participants.

Examples of uses of the data from the registry include:

  • Recognize the health characteristics of those living with Down syndrome
  • Identify medical needs among those living with Down syndrome
  • Determine study feasibility and plan for clinical trials and research studies
  • Assist with recruitment for studies and surveys
  • Use the registry to post study notices

The registry has established three “levels of access” to reflect the differing needs of professional users because projects vary in the types of information required and in their need to have access to participants.

If you have questions, contact the DS-Connect® registry coordinator at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .

Levels of Access to Registry Data

A professional will be able to use DS-Connect® to:

  • View aggregate de-identified registry data
  • Perform advanced searches of the registry data
  • Receive custom data reports
  • Use registry data in a public presentation or publication
  • Propose new survey modules or tools
  • Request a letter of support for a research study
  • Recruit subjects through DS-Connect® for research or a clinical trial
  • Post notices about clinical studies on DS-Connect®
  • Use registry data for an industry purpose

An important goal of the DS-Connect® registry is to assist in developing new clinical trials and other research studies for Down syndrome by connecting the medical research communities with families. We invite professionals to explore how they can partner with DS-Connect® and invite families to participate in studies on DS.

  1. Access Level 1: No formal administrative review is required for this level of access.
    Discover the registry survey questions and answers and how to explore the data.
  2. Access Level 2: Administrative review is required for this level of access. (Level 1 access is required to request level 2 access)
    Discover how to perform customized searches, propose new survey modules, request a letter of support, or view aggregate, de-identified data and receive csv/excel reports of row-by-row de-identified participant data to perform statistical evaluation for analysis, publication or presentation.
    Documents requested:
    • Lead Investigator biosketch/CV/resume
    • Project description
    • Purpose of study
    • Inclusion/exclusion criteria if applicable
    • IRB protocol number if applicable
    The anticipated time of administrative and/or registry review committee approval for level 2 access is 2-4 weeks.
     
  3. Access Level 3: Administrative review and Research Review Committee review is required for this level of access. (Level 1 access is required to request level 3 access)
    This level can be used to post a study announcement on the DS-Connect® website, recruit subjects for a research or clinical study through the DS-Connect® registry coordinator, or to use the data for a commercial purpose.
    Documents requested:
    • Lead Investigator biosketch/CV/resume
    • Project description
    • Purpose of study
    • Summary of Protocol
    • Inclusion/exclusion criteria if applicable
    • IRB Status
    • Funding status/source
    • Study recruitment materials
    • Anticipated dates of Recruitment
    • Study contact name
    • Clinical Trials.gov status (if a clinical trial)
    The anticipated time of the registry review committee approval for level 3 access is 4-8 weeks.