National Coordinating Center for the Regional Genetic Service Collaboratives ( HRSA – ) Joan A. Scott, MS CGC, Chief, Genetics Services Branch Division of Services for Children with Special Healthcare Needs Maternal and Child Health Bureau Health Resources and Services Administration Date February 23, 2015

HRSA : Background The 7 Regional Genetic Service Collaboratives are funded from June 1, 2012 through May 31, The current National Coordinating Center is funded from June 1, 2012 through June 30, 2015 This FOA will fund an NCC for 2 years to support the last two years of work of the RCs

HRSA : Overview Purpose (pg. 1) 1.Develop a framework for a national network of regional genetic centers that will serve as a shared resources for providers and patients in each region assuring that all individuals have access to the same high quality genetic services regardless of where they live;

HRSA : Overview Purpose 2.Support and coordinate the work of Regional Genetic Service Collaboratives (RCs) and disseminate national collaborative activities that address the infrastructure needs of public health genetic services in each state; and 3.Provide a national genetics education and consumer network.

HRSA : Overview Purpose 1.Develop a framework for a national network of regional genetic centers Need to connect patients to services and provide education and support for primary care providers Propose and examine models, each model should  Be informed by needs assessments, stakeholders  Examine how to leverage existing infrastructures  Examine barriers  Be accompanied by standards for what that type of service should entail

HRSA : Overview Purpose 2.Support and coordinate the work of Regional Genetic Service Collaboratives (RCs) Strengthen communication and collaboration  Workgroups of interest include (pg 2): components of genetic services in integrated care delivery systems and accountable care organizations; coverage of services needed by individuals with genetic conditions; long- term follow-up; and telegenetic long distance strategies Provide TA and clinical support Promotes and disseminates findings Facilitates partnerships Evaluates RC activities

HRSA : Overview Purpose 3.Provide a national genetics education and consumer network Provides access to genomic information and resources that cover the lifespan for consumers and the public that is accurate, culturally sensitive, and comprehendible, especially for diverse and underserved populations Area of interest (pg 2) : developing tools and resources that link patients to information and services

HRSA : Overview Funding summary –Project period: June 1, 2015 – May 31, 2017 –Type of award: Cooperative Agreement –No. awards: 1 –Amount: Up to $800,000 per year One meeting in DC for RC project directors, NCC, and HRSA

HRSA : Overview Eligibility requirements (FOA pg. 5) –Per 42 CFR § 51a.3(a), eligible applicants include any public or private entity, including an Indian tribe or tribal organization. Faith- based and community-based organizations are also eligible to apply.

HRSA : Overview Application –SF-424 Application Guide (FOA pg 6) –Tips Read narrative carefully (FOA pg 7) –Describe how you will address each requirement. – Pay attention to how these will track to the review criteria Use clear, plain language Align budget, budget justification, and work plan 80 page limit

HRSA : Overview Review Criterion 1.Need: 10 points 2.Response: 30 points 3.Evaluation: 10 points 4.Impact: 10 points 5.Resources/Capabilities: 30 points 6.Support requested: 10 points

Review Criterion 1: Need 10 - points The extent to which the application demonstrates the problem and associated contributing factors to the problem. The extent to which the applicant demonstrates: 1.an understanding of genetic services, the role of public health genomics in addressing gaps in services, and the need for regionalized systems of care for individuals with or at-risk for genetic conditions; 2.the need for regional center care models informed by needs assessment data, involve the input of a wide range of stakeholders, leverages existing infrastructures, and explores the technological and logistical barriers in providing regionalized services; and 3.the extent to which the applicant demonstrates an understanding of the educational and informational needs of consumers and primary care providers.

Review Criterion 2: Response - 30 points The extent to which the proposed project responds to the “Purpose” included in the program description. The strength of the proposed goals and objectives and their relationship to the identified project. The extent to which the activities (scientific or other) described in the application are capable of addressing the problem and attaining the project objectives. The extent to which the applicant: 1.describes methodology for facilitating or identifying regional needs assessments data that identify gaps in services; 2.engages stakeholders in identifying gaps in services and in developing regional genetic center care models; 3.proposes a plan that will result in the development of a framework for regional genetic center models that ensures all providers and patients have access to high quality genetic information and services regardless of where they live that are responsive to regional needs and varied patient populations, feasible, function as a shared resource;

Review Criterion 2: Response - 30 points 4.proposes a plan to identify the standards of care for each model and address technical and logistical barriers to providing telehealth or other genetic services across state lines including issues with reimbursement and licensure; 5.demonstrates an understanding of the RCs and their activities and proposes a plan that will strengthen communication and collaboration between the RCs, coordinate activities, and promote and disseminate outcomes of national significance are provided to key targets; 6.proposes a plan that develops and vets standardized genetic service components in integrated care delivery systems and ACOs; 7.proposes a plan that evaluates gaps in coverage for services needed by individuals with genetic conditions; 8.describes a plan to work with other stakeholders on improving long-term follow up of individuals; and

Review Criterion 2: Response - 30 points 9.describes a plan to implement a national genetics education and consumer network that provides access to genomic information and resources that cover the lifespan for consumers and the public that is accurate, culturally sensitive, and comprehendible, especially for diverse and underserved populations; available at appropriate literacy levels and in a diversity of languages to reach various populations; demonstrates the importance of tools and resources that link patients to information and services. The information and resources should be available using innovative and multi-modal access and dissemination strategies. Consider outreach activities for non-digital populations.

Review Criterion 3: Evaluation -10 points The strength and effectiveness of the method proposed to monitor and evaluate the project results. Evidence that the evaluative measures will be able to assess: 1) to what extent the program objectives have been met, and 2) to what extent these can be attributed to the project. The extent to which the applicant: 1.describes the plan for the program performance evaluation that will monitor ongoing processes and progress towards the project goals and objectives; and 2.includes a robust continuous quality improvement strategy for the entire proposed project.

Review Criterion 4: Impact – 10 points The feasibility and effectiveness of plans for dissemination of project results, and the extent to which project results may be national in scope, and the degree to which the project activities are replicable, and the sustainability of the program beyond the Federal funding.

Review Criterion 5: Resources/Capabilities – 30 points The extent to which project personnel are qualified by training and/or experience to implement and carry out the project. The capabilities of the applicant organization and the quality and availability of facilities and personnel to fulfill the needs and requirements of the proposed project. For competing continuations, past performance will also be considered. The extent to which the applicant: 1.provides strong evidence that the applicant is a nationally recognized entity with expertise and experience in genetics, public health genetics, and consumer education; 2.describes strong evidence of the technical capacity needed to carry out all the functions associated with providing support for the RCs;

Review Criterion: 6 Support requested – 10 points The reasonableness of the proposed budget for each year of the project period in relation to the objectives, the complexity of the research activities, and the anticipated results. 1.The extent to which costs, as outlined in the budget and required resources sections, are reasonable given the scope of work. 2.The extent to which key personnel have adequate time devoted to the project to achieve project objectives.

HRSA : Overview Q&A provided during TA call Q&A from reviewers