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Frequently Asked Questions
Find clear, concise answers on using the Data Hub, contributing data, and getting support.
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How can individuals with Down syndrome support the INCLUDE DCC?
How can individuals with Down syndrome support the INCLUDE DCC?
The best way for a person with Down syndrome to support the INCLUDE DCC is to participate in research. Researchers, clinicians and participants must work together to understand the causes of medical conditions more commonly experienced by people with Down syndrome.
Participating in research is what helps scientists understand the causes of co-occurring conditions and figure out the best treatments. When enough people participate in these studies and enough data is acquired, we can learn more with the goal of improving health and the quality of life for all people with Down syndrome.
You can view a list of clinical studies that currently need participants with Down syndrome. All featured studies have been reviewed and approved by an Institutional Review Board, The DS-Connect Research Review Committee and meet all of the criteria for informing eligible participants to take part in a study.
What is DS Connect, and how does it support research through the INCLUDE Program?
What is DS Connect, and how does it support research through the INCLUDE Program?
DS-Connect®: The Down syndrome registry is an online survey tool designed to collect demographic data and basic health information from individuals with Down syndrome (DS).
The purposes of DS-Connect® 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.
How is the INCLUDE DCC working to ensure diversity and representation from people with Down syndrome and healthcare providers?
How is the INCLUDE DCC working to ensure diversity and representation from people with Down syndrome and healthcare providers?
INCLUDE DCC is working to create a more diverse community of Down syndrome researchers and participants. We also strive to provide equal access to resources, data and study results.
How can I or my organization partner with the INCLUDE DCC to support the research?
How can I or my organization partner with the INCLUDE DCC to support the research?
INCLUDE DCC Partners are nationally known organizations and individuals committed to supporting the mission and work of the INCLUDE DCC. They are advocates, nonprofits and other groups working in Down syndrome research, support, healthcare and more.
If you would like to learn more about how you or your organization can become a partner in research at the INCLUDE DCC, reach out to our team by emailing us at info@includedcc.org.
Who can access participant data? How can I trust that my data will be used responsibly by researchers?
Who can access participant data? How can I trust that my data will be used responsibly by researchers?
The DCC takes many steps to protect our participants’ privacy. All health records and other data that are added to the INCLUDE Data Hub are “de-identified”. This means the data is not linked to any one person, and any details that can be traced back to a specific person are erased. Your name, address and other personal “identifying” information will not be shared with scientists or anyone else.
Why were the INCLUDE Data Coordinating Center and INCLUDE Data Hub created?
Why were the INCLUDE Data Coordinating Center and INCLUDE Data Hub created?
INCLUDE DCC
In 2018, the National Institutes of Health (NIH) launched the INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) to provide more funding for research areas that will improve the health, quality of life and over all well-being of people with Down syndrome.In 2020, the INCLUDE Project launched the INCLUDE Data Coordinating Center (DCC) to help facilitate research to understand the co-occurring conditions that affect individuals with Down syndrome as well as the general population through advanced data integration with other sources of information and by adopting the principles of “open science”.INCLUDE DCC is funded by NIH through a Cooperative Agreement with Children’s Hospital Philadelphia, University of Colorado Denver, and Sage Bionetworks.
You can learn more about the INCLUDE DCC by reading About Us.
INCLUDE Data Hub
The mission of the INCLUDE DCC’s Data Hub is to speed up scientific discoveries that will continue to improve and enrich the lives of people with Down syndrome. This is done with the help of accessible data and tools that enable collaboration across research disciplines, teams, and communities. This coordination and collaboration will greatly support the growth of a global Down syndrome cohort and lead to better understanding of Down syndrome across the lifespan.
The Data Hub is a portal for users to work together and access a large amount of molecular and clinical data, as well as information for biospecimens, in real time through an online tool to advance Down syndrome research. The Data Hub allows users to store, catalog, search, share, and collect “big” data in a simple and organized manner. It also allows for analysis in the cloud, avoiding the need to download large amounts of data and promotes more clarity in data sharing.
You can view FAQs, How-To guides, and other helpful resources to get the most out of the INCLUDE Data Hub.
What is the NIH INCLUDE Project?
What is the NIH INCLUDE Project?
The goal of the National Institutes of Health (NIH) INCLUDE Project is to improve the health and quality of life of people with Down syndrome. INCLUDE stands for INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE.
To learn more about the NIH INCLUDE Project, read the INCLUDE Project Frequently Asked Questions
How can individuals with Down syndrome support the INCLUDE DCC?
The best way for a person with Down syndrome to support the INCLUDE DCC is to participate in research. Researchers, clinicians and participants must work together to understand the causes of medical conditions more commonly experienced by people with Down syndrome.
Participating in research is what helps scientists understand the causes of co-occurring conditions and figure out the best treatments. When enough people participate in these studies and enough data is acquired, we can learn more with the goal of improving health and the quality of life for all people with Down syndrome.
You can view a list of clinical studies that currently need participants with Down syndrome. All featured studies have been reviewed and approved by an Institutional Review Board, The DS-Connect Research Review Committee and meet all of the criteria for informing eligible participants to take part in a study.
What is DS Connect, and how does it support research through the INCLUDE Program?
DS-Connect®: The Down syndrome registry is an online survey tool designed to collect demographic data and basic health information from individuals with Down syndrome (DS).
The purposes of DS-Connect® 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.
How is the INCLUDE DCC working to ensure diversity and representation from people with Down syndrome and healthcare providers?
INCLUDE DCC is working to create a more diverse community of Down syndrome researchers and participants. We also strive to provide equal access to resources, data and study results.
How can I or my organization partner with the INCLUDE DCC to support the research?
INCLUDE DCC Partners are nationally known organizations and individuals committed to supporting the mission and work of the INCLUDE DCC. They are advocates, nonprofits and other groups working in Down syndrome research, support, healthcare and more.
If you would like to learn more about how you or your organization can become a partner in research at the INCLUDE DCC, reach out to our team by emailing us at info@includedcc.org.
Who can access participant data? How can I trust that my data will be used responsibly by researchers?
The DCC takes many steps to protect our participants’ privacy. All health records and other data that are added to the INCLUDE Data Hub are “de-identified”. This means the data is not linked to any one person, and any details that can be traced back to a specific person are erased. Your name, address and other personal “identifying” information will not be shared with scientists or anyone else.
Why were the INCLUDE Data Coordinating Center and INCLUDE Data Hub created?
INCLUDE DCC
In 2018, the National Institutes of Health (NIH) launched the INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE) to provide more funding for research areas that will improve the health, quality of life and over all well-being of people with Down syndrome.In 2020, the INCLUDE Project launched the INCLUDE Data Coordinating Center (DCC) to help facilitate research to understand the co-occurring conditions that affect individuals with Down syndrome as well as the general population through advanced data integration with other sources of information and by adopting the principles of “open science”.INCLUDE DCC is funded by NIH through a Cooperative Agreement with Children’s Hospital Philadelphia, University of Colorado Denver, and Sage Bionetworks.
You can learn more about the INCLUDE DCC by reading About Us.
INCLUDE Data Hub
The mission of the INCLUDE DCC’s Data Hub is to speed up scientific discoveries that will continue to improve and enrich the lives of people with Down syndrome. This is done with the help of accessible data and tools that enable collaboration across research disciplines, teams, and communities. This coordination and collaboration will greatly support the growth of a global Down syndrome cohort and lead to better understanding of Down syndrome across the lifespan.
The Data Hub is a portal for users to work together and access a large amount of molecular and clinical data, as well as information for biospecimens, in real time through an online tool to advance Down syndrome research. The Data Hub allows users to store, catalog, search, share, and collect “big” data in a simple and organized manner. It also allows for analysis in the cloud, avoiding the need to download large amounts of data and promotes more clarity in data sharing.
You can view FAQs, How-To guides, and other helpful resources to get the most out of the INCLUDE Data Hub.
What is the NIH INCLUDE Project?
The goal of the National Institutes of Health (NIH) INCLUDE Project is to improve the health and quality of life of people with Down syndrome. INCLUDE stands for INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE.
To learn more about the NIH INCLUDE Project, read the INCLUDE Project Frequently Asked Questions
Resources for Researchers & Contributors
Find protocols, SOPs, training guides, and more in our resource hub.
