SouthEast Regional Genetics Collaborative– Regional Genetics Newborn Screening Collaborative (SERG/SERC)

Research output: Other contributionOther

Abstract

Title: SouthEast Regional Genetics Collaborative– Regional Genetics Newborn Screening Collaborative (SERG/SERC)

Funding Agency: Health Resources and Services Administration (HRSA) – Maternal Child Health Bureau (MCHB)/Genetic Services Branch (GSB)

Total Amount: $250,000 (total to UNCG)/5 Years

Percent Effort on Project: 20%

Funding Period: 6/12 – 5/17

Role on Project: Co-PI/Director Process Monitoring and Outcome Evaluation (M&E) Framework Core Project Description: The SouthEast Regional Genetics Collaborative (SERG) proposes to build, implement and assess an eight states and two territories effort to assist the HRSA/MCHB/GSB 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, with the following objectives: a) To strengthen communication and collaboration among public health, individuals, families, primary care providers, and genetic medicine and other Subspecialty Providers; and b) to quantitatively and qualitatively evaluate outcomes of projects undertaken to accomplish their goals. Over four years SERG proposes to accomplish this work through efforts linked to five core goals. These are: 1) Priority Area 1: Continuation and Expansion of Medical Home and Transitioning Core by 1.1. Region 3 will serve as the regional coordinator to improve the process of newborn screening and follow-up by identifying and developing innovative approaches to strengthen the linkages between newborn screening programs, families, and child health care providers; and to increase the number of child health care providers that can provide a medical home in order to improve access to, coordinate, and ensure continuity of health care; and 1.2. Identify, develop, and implement a regional transitioning model/plan that incorporates the needs of those with heritable disorders recognizing the importance of continuity of care and a medical home during the transition from pediatric to adult health care and during pregnancy; and identify, network with, and educate patients with heritable disorders in the region to ensure current and accurate knowledge about regional genetic services to improve their quality of health and access to appropriate health care; 2) Priority Area 2: Newborn Screening Long-Term Follow-Up and Access to Quality Healthcare Services Core by 2.1. Region 3 will serve as a NBS LTFU developmental coordinator to: (a) identify follow-up strategies from available sources of data (current and existing), (b) integrate disease-specific management tactics into an evidence-based inventory, and (c) improve linkages between public health-based NBS programs and care in the LTFU settings that is largely outside of the public health systems; and 2.2. Develop and implement a comprehensive LTFU information system that incorporates evidence-based practices to: (a) serve as a resource for practitioners and families with TMS-diagnosed disorders in SERC, (b) enhance patient access to genetic services, and (c) improve patient-oriented long-term clinical outcomes; 3) Priority Area 3: Advance Information Technology Core by 3.1. Develop and implement a regional advanced informatics core and expand telecommunication infrastructure to facilitate information sharing among providers of genetic services, other health care professionals, and consumers; and develop regional telemedicine care systems that will increase access to healthcare for children and adults with genetic conditions; 4) Priority Area 4: Implementation of a Workforce Capacity Core by 4.1. Examine workforce needs across key sectors of the genetics services system (e.g. laboratory services, genetic counseling services, clinical services, etc.); 4.2. Evaluate models aimed at improving workforce capacity across the genetic services system; 4.3. Where needed, develop educational materials aimed at proving the knowledge of those in genetic services system; 4.4. Identify and implement methods of (a) increasing the number of qualified genetic services personnel and (b) improve their training; and 5) Priority Area 5: Process Monitoring and Outcome Evaluation (M&E) Framework Core - A monitoring and evaluation (M&E) framework will be implemented in order to assess performance, process and outcomes of the SERG/SERC. Specifically the framework will integrate life course theory, evaluation approaches and models to constitute predominantly performance monitoring, and process evaluation. Outcome evaluation will be minimalistic and core-specific in nature.

Original languageAmerican English
StatePublished - 2012

DC Disciplines

  • Community Health
  • Community Health and Preventive Medicine
  • Public Health
  • Public Health Education and Promotion

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