This announcement solicits applications for the National Coordinating Center for the Regional Genetic Services Collaboratives.
The program was established to enhance, improve, or expand the ability of state and local public health agencies through working with academic and community based organizations
to provide screening, counseling, or health care services to newborns and children having or at risk for heritable disorders.
The primary goals of the National Coordinating Center (NCC) are to:
-1 Assist the Regional Collaboratives to achieve and provide a model of strategies to strengthen communication, partnerships and collaboration among public health, families, primary care providers, and genetic medicine and other subspecialty providers; -2 Work with the Regional Collaboratives to ensure that individuals with heritable disorders and their families have access to quality care and appropriate genetic expertise and information in the context of a medical home that provides accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and culturally effective care over the life course; -3 Develop and implement an evaluation program to quantitatively and qualitatively evaluate outcomes of projects undertaken by the Regional Collaboratives and the National Coordinating Center.
This should include a learning collaborative and ongoing analysis; -4 Develop electronic medical record (EMR) specifications for Clinical Genetic Patient Care work with National Library of Medicine (NLM) and various EMR vendors to develop electronic medical record specifications of clinical guidelines for genetic conditions.
These specifications should be useful for system developers and/or vendors to include in electronic medical record systems.
The specifications must detail requirements and options for the system (i.e., When should the system enable decision support?).
Clinical guidelines must be researched thoroughly by the awardee in order to create the most up-to-date specifications.
The specifications will be tested and validated by the Regional Genetics and Newborn Screening Collaboratives; -5 Collaboration with other programs that intersect with this project, coordinate and provide assistance to MCHB-funded programs, including but not limited to the National Newborn Screening Technical Assistance and Data Repository, the National Coordinating Center for Regional Hemophilia Networks, the National Consumer Center for Genetics Resources and Services and the Clearinghouse of Newborn Screening Information.
Form partnerships with various stakeholders including Federal and non-Federal organizations for innovative methods of data collection, quality improvement and educational outreach; -6 Support further development of the existing collaborative work on data sets for follow-up of newborn screening and development of data dictionaries and common ontology for use with electronic medical records and registries -7 The awardee will be expected to hold and fund the logistical costs for at minimum ONE (1) joint meeting per year of the National Coordinating Center/Regional Collaborative Project Directors in the Washington DC area that will also be attended by the Project Officers/HRSA staff.
-8 Development of a National Genetics Education and Consumer Network that will function to:
? Assist consumers - individuals, parents and families - gain access to quality information and education, in order to make informed decisions about their or their children's health care ? Actively engage the participation of consumer groups in order to ensure they have opportunities to form connections with peers or mentors in supportive, educational or faith-based networks that enhance social well-being and community life and have opportunities to participate in leadership development, decision-making, program policy development, as well as community and State organizing activities to improve children's health, development and learning experiences.
? Serve as a bridging force between consumers and the services provided by HRSA-funded F2F HICs, National Technical Assistance Centers and Clearinghouses, and Genetics Regional Collaboratives, as well as national centers focusing on family/professional partnerships and Parent, Family and Community Engagement, to ensure consumers have access to needed genetics information, resources and health services; ? Build, enhance, improve or expand ongoing mechanisms to link State genetics programs, family services, community and other academic and consumer organizations to promote genetics education; and ? Provide mechanisms for national dissemination of existing genetics resources and services information, including, but not limited to, product development - at appropriate literacy levels - when gaps are identified.
? Develop an advisory body of stakeholders to ensure that the project meets the these requirements The growth and expansion of internet accessibility and capabilities should be balanced with personal outreach and interactions with consumer and advocacy groups.
This will help to ameliorate some of the disparities that can be exacerbated by relying solely on technical means for dissemination and education.
-9 The awardee will be expected to conduct or contract out development of a quality assessment educational program based on the learning collaborative model.
The meetings for this collaborative should occur, at minimum, annually.
Ongoing analysis of outcomes and changes for the Coordinating Center and the Regional Collaboratives are also expected.