DS-Connect™: The Down Syndrome Registry

Image Courtesy of National Institutes of Health
Image Courtesy of National Institutes of Health

A national registry has been launched in September 2013 to create an online community for people with Down syndrome, their families, and doctors and scientists who are dedicated to improving their health and lives. The repository is known as DS-Connect.

The National Institutes of Health had this to say on their website about the back-story of how DS-Connect came to be:

“After several years of working with scientific and family communities to achieve the various goals of the NIH Research Plan on Down Syndrome that was created in 2007, the NIH formed the Down Syndrome Consortium to foster communication and idea-sharing among NIH, individuals with Down syndrome and their families, national organizations interested in Down syndrome, and pediatric and other groups. One of its first activities was to create a Down syndrome registry, now called DS-Connect™: The NIH Down Syndrome Consortium Registry.”

Photo Courtesy of National Institutes of Health
Photo Courtesy of National Institutes of Health

For those who register and give consent, they will have the opportunity to be contacted by researchers to participate in research studies. Families can connect with each other to  share stories and get support. The registry will provide users with general information about Down syndrome and they can opt to participate in surveys where statistical data is then shared.  Profiles are customizable and can also be used to set reminders and appointments. DS-Connect is a confidential database and complies with regulations and laws governing privacy and health data.

If you have questions about the registry, contact NIH at: DSConnect@nih.gov.

U.S. Department of Labor Announced Two New Rules: More Jobs to Become Available to Disabled

Photo Courtesy of U.S. Department of Labor
Photo Courtesy of U.S. Department of Labor

On August 27th, 2013, two new rules have been announced by the U.S. Department of Labor that will mandate those who contract with the federal government and have at least 50 employees to set benchmarks for hiring veterans and people with disabilities. The purpose of the rules is to make it easier for employers to diversify their workforce by tapping into a larger pool of qualified candidates while opening up more opportunities to veterans and disabled people.  The Office of Federal Contract Compliance Programs (OFCCP) enforces the existing Vietnam Era Veterans’ Readjustment Assistance Act of 1974 and Section 503 of the Rehabilitation Act of 1973. These laws require federal contractors to affirmatively hire qualified veterans and people with disabilities.  

According to the U.S. Department of Labor’s August 2013 statics, the current percentage of unemployed disabled persons is at 14.1%. Counting the unemployment rate began in 1940 and since the percentage of unemployed people with disabilities has become a statistic, the number has remained relatively consistent. Labor officials say that the new Section 503 rule could open up nearly 600,000 jobs for individuals with disabilities.

The rules will become effective 180 after they are published in the Federal Register.

Click the links to review highlights of the final rules for the Vietnam Era Veterans’ Readjustment Assistance Act and for Section 503 of the Rehabilitation Act.