Amendment to Section III Award Information and Requirements: Average Award

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Centers for Disease Control and Prevention (CDC)

National Charcot-Marie-Tooth Resource Center

I. AUTHORIZATION AND INTENT

Announcement Type:New – Type 1

Funding Opportunity Number: CDC-RFA-DD10-1014

Catalog of Federal Domestic Assistance Number: 93.184

Key Dates:

Application Deadline Date: May 14, 2010, on Grants.gov, 11:59pm Eastern Standard Time

Authority:

This program is authorized under Sections 301 and 317C of the Public Health Service Act, (42 U.S.C., Sections 241, 243, and 247b-4), as amended.

Background:

Charcot-Marie-Tooth (CMT) Hereditary Neuropathy is a group of genetic disorders characterized by progressive distal motor and sensory neuropathy. Clinical features manifest between the first and third decades of life and include distal muscle weakness and wasting, mild to moderate sensory loss, depressed tendon reflexes, high-arched feet (pes cavus), and hip dysplasia. Charcot-Marie-Tooth disease (CMT) is one of the most common inherited neurological disorders, affecting approximately 1 in 2,500 people in the United States (NIH, National Institute of Neurological Disorders and Stroke, 2009).

Although there is no cure for CMT, most affected individuals have a normal lifespan.

The gene mutations in CMT diseases are usually inherited. There are many forms of CMT disease, including CMT1, CMT2, CMT3, CMT4, and CMTX. Although different proteins are abnormal in these different forms of CMT disease, all of the mutations affect the normal function of the peripheral nerves. Consequently, these nerves slowly degenerate and lose the ability to communicate with their distant targets. The degeneration of motor nerves results in muscle weakness and atrophy in the extremities (arms, legs, hands, or feet). In some cases the degeneration of sensory nerves results in a reduced ability to feel heat, cold, and pain.

The severity of symptoms is variable in different CMT patients and even among family members with the disease. Individuals who have CMTand families affected by CMT may experience diagnostic delays and difficulties finding appropriate medical and social services. Resources are needed toincrease knowledge and awareness ofCMT for individuals and families affected by CMT,health care providers, and allied health care providers to improve health outcomes and promote well-being for people affected by this disease.

Purpose:

The purpose of the program is to establish a National Charcot-Marie-Tooth (CMT) Resource Center that will promote collaborative relationships between individuals who have CMT and their health care providers through education, training, and dissemination of information to promote accurate diagnosis, optimal treatment, and well-being for individuals who have CMT. The CMT Resource Center will provide resource materials online and in print to increase access to accurate and scientifically valid information on the etiology, diagnosis, and treatment of Charcot-Marie-Tooth (CMT), as well as links to useful resources for individuals and families affected by CMT and health care providers. The CMT Resource Center will expand the reach of disseminated information through collaborations with other organizations that target the national community of persons with CMT and their families, caregivers, and the health care professionals who manage and coordinate care.

This program addresses the “Healthy People 2010” focus area 6: Promote the health of people with disabilities, prevent secondary conditions, and eliminate disparities between people with and without disabilities in the U.S. population.Measurable outcomes of the program will be in alignment with one (or more) of the followingperformance goals for the National Center on Birth Defects and Developmental Disabilities:

  • Improving the health and well-being of people with disabilities
  • Helping children to develop and reach their full potential
  • Promoting health and well-being among people of all ages with disabilities

This announcement is only for non-research activities supported by CDC. If research is proposed, the application will not be reviewed. For the definition of research, please see the CDC Web site at the following Internet address:

II. PROGRAM IMPLEMENTATION

Recipient Activities:

1.Establish a National Charcot-Marie-Tooth (CMT) Resource Center that provides resource materials online and in print to increase access to accurate and scientifically valid information on the etiology, diagnosis, and treatment of CMT, as well as links to useful resources for individuals and families affected by CMT and health care providers.

2.Create a toolkit of resources for individuals and families affected by CMT to be housed on the National CMT Resource Center website and available in print. The toolkit will contain resources that reflect accurate and scientifically valid information on the etiology, diagnosis, and treatment of CMT, as well as links to useful resources for individuals and families affected by CMT.

  • Identify experts who can review and evaluate current educational and outreach materials targeting persons affected by CMT and their families, and identify gaps in knowledge. Develop materials to address identified gaps that reflect evidence-based knowledge, expert opinion, and standards of care in clinical practice. Materials will be available in differing formats to respond to the needs of individuals and families affected by CMT. These materials may include: publications available in print and via download, such as brochures, white papers, algorithms, educational seminars, Webinars, and online training; searchable video and publication libraries; podcasts that may be archived; interactive Websites or Web portals.

3.Disseminate the toolkit to CMT patients and families.

  • The recipient will ensure that a dissemination plan for the materials is developed and will describe methods for reaching underserved and minority communities, including translating Resource Center information into multiple languages, specifically Spanish, using plain language.
  • Identify and collaborate with non-profit and community-based organizations that serve CMT patients and families affected by CMT, such as grassroots organizations located within the underserved targeted populations, to disseminate the toolkit.
  • Dissemination should include a wide range of communication vehicles, such as: newsletters, e-newsletters, magazines, e-cards, videos, CDs, and social media (e.g., viral media, streaming video, Facebook, Myspace, Twitter, LinkedIn), as well as dissemination at targeted events.

4.Create a toolkit for health care professionals who manage health care of individuals who have CMT to be housed on the National CMT Resource Centerwebsite and available in print. The toolkit will provide a Web-based portal for health care professionals and contain resources that reflect accurate and scientifically valid information on the etiology, diagnosis, and treatment of CMT for professionals as well as links to useful resources for individuals and families affected by CMT.

  • Identify experts who can review and evaluate current educational and outreach materials targeted to health care professionals, and identify gaps in knowledge. Develop materials to address identified gaps that reflect evidence-based knowledge, expert opinion, and standards of care in clinical practice. The materials should include accurate and scientifically valid information on the etiology, diagnosis, clinical course, treatment standards or guidelines, genetic counseling, and available services related to CMT. As available, materials should be specific to different types of CMT or different manifestation of CMT (axonopathy and/or myelinopathy).These materials may include: peer-reviewed literature related to clinical studies, publications available in print and via download, white papers, care-based algorithms; educational seminars, Webinars, and online training; searchable video and publication libraries; podcasts that may be archived; interactive Websites or Web portals

5.Disseminate the toolkit to health care professionals treating individuals and families affected by CMT.

  • The recipient will ensure that a dissemination plan for the materials is developed and will describe methods for reaching underserved and minority communities, including translating Resource Center information into multiple languages, specifically Spanish, using plain language.
  • Dissemination should include a wide range of communication vehicles, such as: newsletters, e-newsletters, magazines, e-cards, videos, CDs, and social media (e.g., viral media, streaming video, Facebook, Myspace, Twitter, LinkedIn), as well as dissemination at targeted events.

6.Conduct educational activities in coordination with organizations and professional associations, such as the American Academy of Neurology (AAN), American Academy of Family Physicians (AAFP), American Medical Association (AMA),American Association of Pediatrics (AAP), American Nurses Association (ANA), American Occupational Therapy Association (AOTA), American Physical Therapy Association (APTA), and other national and/or international organizations that offer services or direct educational messages to people who are affected by CMT and their providers. These educational activities can include: presentations at meetings;publications available in print and via download, such as white papers and algorithms; and educational seminars, Webinars, and online training. The recipient will evaluate the outcomes of the educational activities through pre- and post-tests of attendees’ knowledge of material presented during the educational activities.

7.Develop and implement a plan to evaluate the effectiveness of the National CMT Resource Center, providing an annual evaluation report. The evaluation should include both qualitative and quantitative data indicating the demographics of the population served, type of inquiries, and other relevant evaluation indicators. Evaluation measures may include: tracking social media responses; evaluating targeted groups’ CMT knowledge using print and online surveys; using Web analytics (e.g., number of unique visitors, length of visit per Web page, use of Google analytics and other internet evaluation mechanisms); and using Web or telephone surveys.The developed evaluation plan should also use the evaluation data to improve program activities in Years 2 and 3.

In a cooperative agreement, CDC staff is substantially involved in the program activities, above and beyond routine grant monitoring.

CDC Activities:

  1. Provide technical guidance, consultation and assistance on the development of a National Charcot-Marie-Tooth (CMT) Resource Center.
  2. Provide technical guidance, consultation and assistance on the development, dissemination, and evaluation of toolkits for individuals with CMT and families and health care professionals to include:
  • review of educational and outreach materials;
  • technical consultation on communication mechanisms for dissemination to all targeted populations, including underserved and minority communities,and using plain language.
  1. Facilitate collaboration between the recipient and other non-profit and community-based organizations that target the national community of persons with CMT and their families, caregivers, and the health care professionals to support activities outlined in this award.
  2. Facilitate collaboration between recipient and educational and professional organizations to support educational activities.
  3. Provide technical assistance in evaluating the effectiveness of the National CMT Resource Center.

III. AWARD INFORMATION AND REQUIREMENTS

Type of Award: Cooperative Agreement.

CDC substantial involvement in this program appears in the Activities Section above.

Award Mechanism: U38

Fiscal Year Funds: 2010

Approximate Current Fiscal Year Funding: $ 800,000

Approximate Total Project Period Funding: $2,400,000(This amount is an estimate, includes direct and indirect costs, and is subject to availability of funds.

Approximate Number of Awards: 1

Approximate Average Award: $800,000(This amount is for the first 12-month budget period, and includes both directand indirect costs

Floor of Individual Award Range: None

Ceiling of Individual Award Range: $800,000(This ceiling is for the first 12-month budget period and includes direct and indirect costs.)

Anticipated Award Date: September 1, 2010

Budget Period Length: 12 months

Project Period Length:3 years

Throughout the project period, CDC’s commitment to continuation of awards will be conditioned on the availability of funds, evidence of satisfactory progress by the recipient (as documented in required reports), and the determination that continued funding is in the best interest of the Federal government.

IV. ELIGIBILITY

Eligible applicants that can apply for this funding opportunity are listed below:

  • Nonprofit with 501C3 IRS status (other than institution of higher education)
  • Nonprofit without 501C3 IRS status (other than institution of higher education)
  • For-profit organizations (other than small business)
  • Small, minority, and women-owned businesses
  • Universities
  • Colleges
  • Research institutions
  • Hospitals
  • Community-based organizations
  • Faith-based organizations
  • Federally recognized or state-recognized American Indian/Alaska Native tribal governments
  • American Indian/Alaska native tribally designated organizations
  • Alaska Native health corporations
  • Urban Indian health organizations
  • Tribal epidemiology centers
  • State and local governments or their Bona Fide Agents (this includes the District of Columbia, the Commonwealth of Puerto Rico, the Virgin Islands, the Commonwealth of the Northern Marianna Islands, American Samoa, Guam, the Federated States of Micronesia, the Republic of the Marshall Islands, and the Republic of Palau)
  • Political subdivisions of States (in consultation with States)

A Bona Fide Agent is an agency/organization identified by the state as eligible to submit an application under the state eligibility in lieu of a state application. If applying as a bona fide agent of a state or local government, a letter from the state or local government as documentation of the status is required. Attach with “Other Attachment Forms” when submitting via

SPECIAL ELIGIBILITY CRITERIA: Licensing/Credential/Permits

Cost Sharing or Matching

Cost sharing or matching funds are not required for this program.

Maintenance of Effort

Maintenance of Effort is not required for this program.

Special Requirements:

  • If the application is in-complete or non-responsive to the special requirements listed in this section, it will not be entered into the review process. The applicant will be notified the application did not meet submission requirements.
  • Late applications will be considered non-responsive. See Section V. “Submission Dates and Times” for more information.

Note: Title 2 of the United States Code Section 1611 states that an organization described in Section 501(c)(4) of the Internal Revenue Code that engages in lobbying activities is not eligible to receive Federal funds constituting a grant, loan, or an award.

Intergovernmental Review of Applications

Executive Order 12372 does not apply to this program.

V. Application Content

Unless specifically indicated, this announcement requires submission of the following information:

A Project Abstract must be completedin the Grants.gov application forms. The Project Abstract must contain a summary of the proposed activity suitable for dissemination to the public. It should be a self-contained description of the project and should contain a statement of objectives and methods to be employed. It should be informative to other persons working in the same or related fields and insofar as possible understandable to a technically literate lay reader. This abstract must not include any proprietary/confidential information.

A Project Narrative must be submitted with the application forms. The project narrative must be uploaded in a PDF file format when submitting via Grants.gov. The narrative must be submitted in the following format:

  • Maximum number of pages: 25 If your narrative exceeds the page limit, only the first pages which are within the page limit will be reviewed.
  • Font size: 12 point unreduced, Times New Roman
  • Single spaced
  • Paper size: 8.5 by 11 inches
  • Page margin size: One inch
  • Number all narrative pages; not to exceed the maximum number of pages.
  • Printed only one side of page.
  • Held together only by rubber bands or metal clips; not bound in any other way.

The narrative should address activities to be conducted over the entire project period and must include the following items in the order listed:

  1. Background, Needs Assessment and Infrastructure- Provide relevant information on the applicant’s infrastructure, relevant experience and expertise to establish a national resource center and perform the proposed activities. Describe the need for the proposed National CMT ResourceCenter and how they will develop, enhance, and compliment the planned activities outlined.
  2. Operational Plan and Evaluation Plan – Provide a work plan that includes objectives, methods, evaluation plans, and a timeline for each proposed activity. Objectives should be specific, measureable, achievable, realistic, and time-phased. Applicant should describe what is to happen, by when, by whom, and to what degree.
  • Specific – Be precise about what you are achieving, describe a target and intended outcome.
  • Measureable – Quantify your objectives…use baselines whenever possible so change can be measured.
  • Achievable – Match activities with available resources.
  • Realistic – Do you have the resources to make the objective happen (personnel, funds, equipment, and materials)?
  • Time-phased – State when you expect to achieve the objectives.
  1. Methods should describe the plan for achieving each of the objectives identified, including a description of how other organizations targeting the national community of CMT individuals will be involved.
  2. Evaluation plans should include a description of how progress towards attainment of the objectives will be monitored and who will be responsible for evaluation.
  3. A timeline with milestones for all objectives at a minimum should identify related activities, start and completion dates, and the name of person (s) responsible for achievement/implementation.
  4. Management and Staffing Plan – Describe how the program will be effectively managed. Include the following:
  • Management structure including the lines of authority and plans for fiscal control.
  • The staff positions responsible for implementation.
  • Qualifications and experience of the designated staff.
  1. Budget justification – Provide a detailed budget request and line item justification of all proposed operating expenses. The budget and budget justification will be included as a separate attachment, not to be counted in the narrative page limit.

Additional information may be included in the application appendices. The appendices will not be counted toward the narrative page limit. This additional information includes: