National Coordinating and Evaluation Center

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Welcome to the National Coordinating and Evaluation Center for the Sickle Cell Disease Newborn Screening Program

The Sickle Cell Disease Newborn Screening Program is comprised of six community-based sickle cell disease projects located in Illinois, Massachusetts, New York, Ohio, Pennsylvania and Tennessee and the National Coordinating and Evaluation Center, located at the National Initiative for Children’s Healthcare Quality.

The community-based sickle cell disease projects partner with state newborn screening programs, comprehensive sickle cell treatment centers and health care professionals to provide support to infants screened positive for SCD and trait and their families. The projects work cooperatively and with the National Coordinating and Evaluation Center to implement a model program of sickle cell disease carrier follow-up to include notification, extended family testing, counseling and education of affected individuals and families.

The Sickle Cell Disease Newborn Screening Program is administered by the Genetic Service Branch of the Division of Services for Children with Special Health Needs in Health Resources and Services Administration's Maternal and Child Health Bureau. For more information on MCHB programs, visit the Bureau's Web site at www.mchb.hrsa.gov.

Please take the time to read the Disclaimer and Privacy Policy and the Terms and Conditions of Use of the NCEC website.

 

Welcome to the website of the National Coordinating and Evaluation Center- SCDAA for the Sickle Cell Disease Newborn Screening Program. Please take a moment to read the following statement regarding policy, confidentiality, and disclaimers. Once you click your acceptance below, you will be free to navigate throughout the site. Thank you for your cooperation, and enjoy your visit!

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SUMMARY OF IMPORTANT LEGAL INFORMATION

The sicklecelldisease.net website (the "Site") is produced for the National Coordinating and Evaluation Center (NCEC) -SCDAA, the grantees participating in the Sickle Cell Disease Newborn Screening Program and their partners. All use of the Site is subject to the Terms and Conditions set forth below. By entering and using the Site, you acknowledge that you have read and understood such Terms and Conditions and that you agree to abide by them. The Site is designed for informational and educational purposes only. NCEC does not endorse, guarantee, warrant, or recommend any products or services discussed or advertised on the Site or linked from the Site. The NCEC-SCDAA retains all copyrights and other proprietary rights in or relating to any content, including any software or educational materials, provided on the Site. You may download and print a small number of copies of the content for scientific or educational uses. You may not sell, transfer, reproduce, transmit, distribute, perform or display such content for any commercial purpose without the express consent of the NCEC-SCDAA.

PRIVACY POLICY NCEC-SCDAA provides the following privacy policy (the "Privacy Policy") in order to demonstrate our firm commitment to privacy. The Privacy Policy may be amended from time to time. The NCEC home page will indicate the date that the Privacy Policy was most recently updated.

a. Collection of Personal Information. NCEC -SCDAA may ask for information about our users at the point of downloading educational materials. This information tells us about the types of people (e.g., providers vs. patients, grantees vs. nongrantees) who use the Site and helps us in the development of materials for our grantees and their clients.

b. Use of Personally Identifiable Information. NCEC-SCDAA will not sell or otherwise transfer or disclose personally identifiable information to third parties without the user's prior consent except as may be required by federal, state or local law, or by exigent circumstances. NCEC-SCDAA also may use your profile information on an aggregate basis -- without personal identifiers -- to develop and display new features and content for the Site, and to provide others with aggregate information about our users and the usage patterns of the Site. NCEC-SCDAA also may perform statistical analyses of user behavior (on a de-identified aggregate basis) in order to measure interest in and use of the various areas of the Site.

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d. Voluntary Disclosure of Personally Identifiable Information on Forum Boards. Users should be aware that when they voluntarily disclose personally identifiable information (for example user name, email address) on an Interactive Area of the Site, that information, along with any substantive information disclosed in the user's communication, can be collected and correlated and used by third parties and may result in unsolicited messages from third parties. Such activities are beyond the control of the NCEC and the NCEC is not responsible for the discoverability of any user's identify by methods beyond our control.

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h. Parental Permission. NCEC does not intend that children will use the Site. Some of the information available on the Site may not be appropriate for children. USERS UNDER 18 YEARS OF AGE MUST OBTAIN PARENTAL PERMISSION TO USE THE SITE. Adults should not assist unauthorized children to access the Site. NCEC will not knowingly collect, use or disclose personally identifiable information about visitors under 18 years of age.

     

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