State-Based Tracking Systems
Rhode Island

Program: Rhode Island Birth Defects Surveillance Program (RIBDSP)
Organization: Rhode Island Department of Health
Project Period: February 2010–January 2015
Project Director: Samara Viner-Brown, MS
Website: http://www.health.ri.gov/programs/birthdefects/index.php

The Rhode Island Birth Defects Surveillance Program (RIBDSP) was created in 2000. It collects information from multiple sources to track children born with birth defects from birth to 5 years of age. RIBDSP monitors about 12,000 births per year in the state. The program also works to prevent birth defects, ensure early reporting of cases, and link families to support services and information. Through partnership and data sharing, RIBDSP works to strengthen data reporting and tracking methods to guide birth defects prevention and referral efforts in Rhode Island.

 

Grantee Goals and Activities

Surveillance

• Continuously solicit data from specialty clinics, hospitals, and both prenatal and genetic counseling centers.
• Develop a data collection system to better evaluate referral services and get information to families.
• Disseminate data to other state agencies and publish the annual data book for the general public.

Prevention

• Partner with Title V programs, health care centers and local health agencies in planning and implementing prevention efforts.
• Implement primary and secondary prevention activities. Apply different media (surveys, presentations, data books, and focus groups) to educate health professionals and general public on birth defects in Rhode Island.

Referrals

• Use surveys and assessment forms to measure family satisfaction with birth defects support services.
• Work with parent consultants to produce needed support services and identify weak outreach areas.
• Strengthen outreach efforts by supporting home visiting team.
• Evaluate timeliness and effectiveness of referral activities.