DS-Connect {TM}: The Down Syndrome Registry
Last updated on July 2021Recruitment
- Recruitment Status
- Recruiting
- Estimated Enrollment
- Same as current
Summary
- Conditions
- Down Syndrome
- Type
- Observational
- Design
- Observational Model: CohortTime Perspective: Cross-Sectional
Participation Requirements
- Age
- Between 1 years and 125 years
- Gender
- Both males and females
Description
Objective: The development of a patient registry for Down syndrome (DS) was identified as a priority in the 2007 Down Syndrome Research Plan. Under the auspices of the Down Syndrome Consortium, founded in 2011 as a public-private partnership between the NIH and DS advocacy organizations, NICHD award...
Objective: The development of a patient registry for Down syndrome (DS) was identified as a priority in the 2007 Down Syndrome Research Plan. Under the auspices of the Down Syndrome Consortium, founded in 2011 as a public-private partnership between the NIH and DS advocacy organizations, NICHD awarded a contract in 2012 to create a patient-focused online registry to facilitate research participation by individuals with DS. Two advisory boards, composed of advocates, family members, clinicians, researchers, and other relevant parties, have been involved in the development of the registry materials. Study Population: Individuals with DS (including those with mosaic DS and partial trisomy 21) Design: DS-Connect (TM) is an online survey tool designed to collect demographic data and health information from individuals with DS. Outcome measures: The purposes of DS-Connect (TM) are: To identify the various phenotypic manifestations of DS. To identify individuals with DS who may be eligible for research studies or new clinical trials, based on specific information about their diagnosis and health history.
Tracking Information
- NCT #
- NCT01950624
- Collaborators
- Not Provided
- Investigators
- Principal Investigator: Melissa A Parisi, M.D. Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)