This grant is for conducting longitudinal, population-based surveillance of select muscular dystrophies, including Duchenne MD, Becker MD, and others. The core purpose is to describe key health outcomes and inequities, identifying opportunities to improve the health of individuals living with these conditions. Projects will involve tracking individuals across an entire state or region using multiple data sources like neuromuscular clinics and administrative records. Key objectives include estimating prevalence, mortality, and survival; describing disease progression, co-morbidities, and healthcare utilization; and assessing access to care and new treatments. Additional components focus on training data abstractors for quality improvement and exploring novel data collection methods or ICD-10-CM code usage, aiming to generate comprehensive data for improving muscular dystrophy care.
Opportunity ID: 350111
General Information
| Document Type: | Grants Notice |
| Funding Opportunity Number: | CDC-RFA-DD-24-0064 |
| Funding Opportunity Title: | Surveillance of Muscular Dystrophies |
| Opportunity Category: | Discretionary |
| Opportunity Category Explanation: | – |
| Funding Instrument Type: | Cooperative Agreement |
| Category of Funding Activity: | Health |
| Category Explanation: | – |
| Expected Number of Awards: | 10 |
| Assistance Listings: | 93.073 — Birth Defects and Developmental Disabilities – Prevention and Surveillance |
| Cost Sharing or Matching Requirement: | No |
| Version: | Synopsis 3 |
| Posted Date: | Mar 01, 2024 |
| Last Updated Date: | Apr 11, 2024 |
| Original Closing Date for Applications: | May 08, 2024 Electronically submitted applications must be submitted no later than 11:59 pm ET on the listed application due date. |
| Current Closing Date for Applications: | May 08, 2024 Electronically submitted applications must be submitted no later than 11:59 pm ET on the listed application due date. |
| Archive Date: | Jun 13, 2024 |
| Estimated Total Program Funding: | $15,200,000 |
| Award Ceiling: | $700,000 |
| Award Floor: | $250,000 |
Eligibility
| Eligible Applicants: | Small businesses City or township governments Native American tribal governments (Federally recognized) Native American tribal organizations (other than Federally recognized tribal governments) Unrestricted (i.e., open to any type of entity above), subject to any clarification in text field entitled “Additional Information on Eligibility” Nonprofits that do not have a 501(c)(3) status with the IRS, other than institutions of higher education Others (see text field entitled “Additional Information on Eligibility” for clarification) Special district governments Independent school districts Nonprofits having a 501(c)(3) status with the IRS, other than institutions of higher education State governments For profit organizations other than small businesses County governments Public and State controlled institutions of higher education Public housing authorities/Indian housing authorities Private institutions of higher education |
| Additional Information on Eligibility: | For Component B or C:Applicants must demonstrate that they have applied for Component A. Evidence can include a copy of the face page of the application for Component A. |
Additional Information
| Agency Name: | Centers for Disease Control – NCBDDD |
| Description: | The purpose of this NOFO is to conduct longitudinal population-based surveillance of select muscular dystrophies [Duchenne MD (DMD), Becker MD (BMD), myotonic dystrophy (DM), facioscapulohumeral muscular dystrophy (FSHD), limb-girdle MD (LGMD), Congenital MD (CMD), Emery-Dreifuss MD (EDMD), and distal MD] to describe key health outcomes and health inequities, with the goal of identifying opportunities to improve the health of all individuals living with muscular dystrophies. The population included in this surveillance activity can be an entire state or a region within a state, with the applicant utilizing multiple data sources to generate an accurate and complete population-based cohort. Individuals with muscular dystrophy should be identified and followed longitudinally through sources such as neuromuscular, specialty care and other outpatient clinics; administrative data (e.g., vital records, Medicaid/Medicare, hospital discharge); or other sources available to funding recipients. This project will involve three components. Component A (5-7 awards) includes the core surveillance and dissemination activities. Component B (1 award) includes enhanced activities of abstractor training and data quality improvement. Component C (2 awards) is an optional component; awards will be subject to availability of funding.The total estimated funding for Component A is $14,000,000 for 4 years. The total estimated funding for Component B is $400,000 for 4 years. The total estimated funding for Component C is $800,000 over 4 years.Component A objectives include: (1) estimate prevalence of select muscular dystrophies, along with mortality and survival; (2) describe disease progression and co-morbidities; (3) describe healthcare utilization before and after the publication of standards of care, (4) describe access to care and new treatments/health equity; and (5) describe risk factors and protective factors. Component B objectives include: (1) train and provide ongoing training to abstractors in standardized collection of data from medical records and (2) create and implement a plan to periodically assess data quality of abstracted records. The objectives of Component C will be to either (1) develop and evaluate novel approaches to case-finding or longitudinal data collection (e.g., machine learning algorithms, natural language processing automated data extraction/integration), or (2) describe the use of MD-specific ICD-10-CM codes by source. |
| Link to Additional Information: | – |
| Grantor Contact Information: | If you have difficulty accessing the full announcement electronically, please contact:
Kandi Givner
xla7@cdc.gov Email:xla7@cdc.gov |
Version History
| Version | Modification Description | Updated Date |
|---|---|---|
| This synopsis is being updated to reflect the addition of files to the "Other Supporting Documents" section of the announcement on Grants.gov. One file is a FAQ and the other is the webinar’s Powerpoint Deck. | Apr 11, 2024 | |
| Updating synopsis – March 15, 2024 | Mar 01, 2024 | |
| Mar 01, 2024 | ||
| Sep 06, 2023 |
DISPLAYING: Synopsis 3
General Information
| Document Type: | Grants Notice |
| Funding Opportunity Number: | CDC-RFA-DD-24-0064 |
| Funding Opportunity Title: | Surveillance of Muscular Dystrophies |
| Opportunity Category: | Discretionary |
| Opportunity Category Explanation: | – |
| Funding Instrument Type: | Cooperative Agreement |
| Category of Funding Activity: | Health |
| Category Explanation: | – |
| Expected Number of Awards: | 10 |
| Assistance Listings: | 93.073 — Birth Defects and Developmental Disabilities – Prevention and Surveillance |
| Cost Sharing or Matching Requirement: | No |
| Version: | Synopsis 3 |
| Posted Date: | Mar 01, 2024 |
| Last Updated Date: | Apr 11, 2024 |
| Original Closing Date for Applications: | May 08, 2024 Electronically submitted applications must be submitted no later than 11:59 pm ET on the listed application due date. |
| Current Closing Date for Applications: | May 08, 2024 Electronically submitted applications must be submitted no later than 11:59 pm ET on the listed application due date. |
| Archive Date: | Jun 13, 2024 |
| Estimated Total Program Funding: | $15,200,000 |
| Award Ceiling: | $700,000 |
| Award Floor: | $250,000 |
Eligibility
| Eligible Applicants: | Small businesses City or township governments Native American tribal governments (Federally recognized) Native American tribal organizations (other than Federally recognized tribal governments) Unrestricted (i.e., open to any type of entity above), subject to any clarification in text field entitled “Additional Information on Eligibility” Nonprofits that do not have a 501(c)(3) status with the IRS, other than institutions of higher education Others (see text field entitled “Additional Information on Eligibility” for clarification) Special district governments Independent school districts Nonprofits having a 501(c)(3) status with the IRS, other than institutions of higher education State governments For profit organizations other than small businesses County governments Public and State controlled institutions of higher education Public housing authorities/Indian housing authorities Private institutions of higher education |
| Additional Information on Eligibility: | For Component B or C:Applicants must demonstrate that they have applied for Component A. Evidence can include a copy of the face page of the application for Component A. |
Additional Information
| Agency Name: | Centers for Disease Control – NCBDDD |
| Description: | The purpose of this NOFO is to conduct longitudinal population-based surveillance of select muscular dystrophies [Duchenne MD (DMD), Becker MD (BMD), myotonic dystrophy (DM), facioscapulohumeral muscular dystrophy (FSHD), limb-girdle MD (LGMD), Congenital MD (CMD), Emery-Dreifuss MD (EDMD), and distal MD] to describe key health outcomes and health inequities, with the goal of identifying opportunities to improve the health of all individuals living with muscular dystrophies. The population included in this surveillance activity can be an entire state or a region within a state, with the applicant utilizing multiple data sources to generate an accurate and complete population-based cohort. Individuals with muscular dystrophy should be identified and followed longitudinally through sources such as neuromuscular, specialty care and other outpatient clinics; administrative data (e.g., vital records, Medicaid/Medicare, hospital discharge); or other sources available to funding recipients. This project will involve three components. Component A (5-7 awards) includes the core surveillance and dissemination activities. Component B (1 award) includes enhanced activities of abstractor training and data quality improvement. Component C (2 awards) is an optional component; awards will be subject to availability of funding.The total estimated funding for Component A is $14,000,000 for 4 years. The total estimated funding for Component B is $400,000 for 4 years. The total estimated funding for Component C is $800,000 over 4 years.Component A objectives include: (1) estimate prevalence of select muscular dystrophies, along with mortality and survival; (2) describe disease progression and co-morbidities; (3) describe healthcare utilization before and after the publication of standards of care, (4) describe access to care and new treatments/health equity; and (5) describe risk factors and protective factors. Component B objectives include: (1) train and provide ongoing training to abstractors in standardized collection of data from medical records and (2) create and implement a plan to periodically assess data quality of abstracted records. The objectives of Component C will be to either (1) develop and evaluate novel approaches to case-finding or longitudinal data collection (e.g., machine learning algorithms, natural language processing automated data extraction/integration), or (2) describe the use of MD-specific ICD-10-CM codes by source. |
| Link to Additional Information: | – |
| Grantor Contact Information: | If you have difficulty accessing the full announcement electronically, please contact:
Kandi Givner
xla7@cdc.gov Email:xla7@cdc.gov |
DISPLAYING: Synopsis 2
General Information
| Document Type: | Grants Notice |
| Funding Opportunity Number: | CDC-RFA-DD-24-0064 |
| Funding Opportunity Title: | Surveillance of Muscular Dystrophies |
| Opportunity Category: | Discretionary |
| Opportunity Category Explanation: | – |
| Funding Instrument Type: | Cooperative Agreement |
| Category of Funding Activity: | Health |
| Category Explanation: | – |
| Expected Number of Awards: | 10 |
| Assistance Listings: | 93.073 — Birth Defects and Developmental Disabilities – Prevention and Surveillance |
| Cost Sharing or Matching Requirement: | No |
| Version: | Synopsis 2 |
| Posted Date: | Mar 01, 2024 |
| Last Updated Date: | Mar 15, 2024 |
| Original Closing Date for Applications: | – |
| Current Closing Date for Applications: | May 08, 2024 Electronically submitted applications must be submitted no later than 11:59 pm ET on the listed application due date. |
| Archive Date: | Jun 13, 2024 |
| Estimated Total Program Funding: | $15,200,000 |
| Award Ceiling: | $700,000 |
| Award Floor: | $250,000 |
Eligibility
| Eligible Applicants: | Others (see text field entitled “Additional Information on Eligibility” for clarification) County governments Small businesses Public and State controlled institutions of higher education Special district governments Native American tribal governments (Federally recognized) Native American tribal organizations (other than Federally recognized tribal governments) Independent school districts Nonprofits that do not have a 501(c)(3) status with the IRS, other than institutions of higher education Public housing authorities/Indian housing authorities Nonprofits having a 501(c)(3) status with the IRS, other than institutions of higher education Private institutions of higher education City or township governments For profit organizations other than small businesses Unrestricted (i.e., open to any type of entity above), subject to any clarification in text field entitled “Additional Information on Eligibility” State governments |
| Additional Information on Eligibility: | For Component B or C:Applicants must demonstrate that they have applied for Component A. Evidence can include a copy of the face page of the application for Component A. |
Additional Information
| Agency Name: | Centers for Disease Control – NCBDDD |
| Description: | The purpose of this NOFO is to conduct longitudinal population-based surveillance of select muscular dystrophies [Duchenne MD (DMD), Becker MD (BMD), myotonic dystrophy (DM), facioscapulohumeral muscular dystrophy (FSHD), limb-girdle MD (LGMD), Congenital MD (CMD), Emery-Dreifuss MD (EDMD), and distal MD] to describe key health outcomes and health inequities, with the goal of identifying opportunities to improve the health of all individuals living with muscular dystrophies. The population included in this surveillance activity can be an entire state or a region within a state, with the applicant utilizing multiple data sources to generate an accurate and complete population-based cohort. Individuals with muscular dystrophy should be identified and followed longitudinally through sources such as neuromuscular, specialty care and other outpatient clinics; administrative data (e.g., vital records, Medicaid/Medicare, hospital discharge); or other sources available to funding recipients. This project will involve three components. Component A (5-7 awards) includes the core surveillance and dissemination activities. Component B (1 award) includes enhanced activities of abstractor training and data quality improvement. Component C (2 awards) is an optional component; awards will be subject to availability of funding.The total estimated funding for Component A is $14,000,000 for 4 years. The total estimated funding for Component B is $400,000 for 4 years. The total estimated funding for Component C is $800,000 over 4 years.Component A objectives include: (1) estimate prevalence of select muscular dystrophies, along with mortality and survival; (2) describe disease progression and co-morbidities; (3) describe healthcare utilization before and after the publication of standards of care, (4) describe access to care and new treatments/health equity; and (5) describe risk factors and protective factors. Component B objectives include: (1) train and provide ongoing training to abstractors in standardized collection of data from medical records and (2) create and implement a plan to periodically assess data quality of abstracted records. The objectives of Component C will be to either (1) develop and evaluate novel approaches to case-finding or longitudinal data collection (e.g., machine learning algorithms, natural language processing automated data extraction/integration), or (2) describe the use of MD-specific ICD-10-CM codes by source. |
| Link to Additional Information: | – |
| Grantor Contact Information: | If you have difficulty accessing the full announcement electronically, please contact:
Kandi Givner
xla7@cdc.gov Email:xla7@cdc.gov |
DISPLAYING: Synopsis 1
General Information
| Document Type: | Grants Notice |
| Funding Opportunity Number: | CDC-RFA-DD-24-0064 |
| Funding Opportunity Title: | Surveillance of Muscular Dystrophies |
| Opportunity Category: | Discretionary |
| Opportunity Category Explanation: | – |
| Funding Instrument Type: | Cooperative Agreement |
| Category of Funding Activity: | Health |
| Category Explanation: | – |
| Expected Number of Awards: | 10 |
| Assistance Listings: | 93.073 — Birth Defects and Developmental Disabilities – Prevention and Surveillance |
| Cost Sharing or Matching Requirement: | No |
| Version: | Synopsis 1 |
| Posted Date: | Mar 01, 2024 |
| Last Updated Date: | Mar 01, 2024 |
| Original Closing Date for Applications: | – |
| Current Closing Date for Applications: | May 08, 2024 Electronically submitted applications must be submitted no later than 11:59 pm ET on the listed application due date. |
| Archive Date: | May 30, 2024 |
| Estimated Total Program Funding: | $15,200,000 |
| Award Ceiling: | $700,000 |
| Award Floor: | $250,000 |
Eligibility
| Eligible Applicants: | Others (see text field entitled “Additional Information on Eligibility” for clarification) County governments Small businesses Public and State controlled institutions of higher education Special district governments Native American tribal governments (Federally recognized) Native American tribal organizations (other than Federally recognized tribal governments) Independent school districts Nonprofits that do not have a 501(c)(3) status with the IRS, other than institutions of higher education Public housing authorities/Indian housing authorities Nonprofits having a 501(c)(3) status with the IRS, other than institutions of higher education Private institutions of higher education City or township governments For profit organizations other than small businesses Unrestricted (i.e., open to any type of entity above), subject to any clarification in text field entitled “Additional Information on Eligibility” State governments |
| Additional Information on Eligibility: | For Component A:Applicant must show evidence that their proposed site has a population of at least 3 million people and provide the distribution of this population by race and ethnicity. Evidence can be in the form of tables or figures based on census estimates within the last 5 years showing total population for the proposed study area with the distribution by race and ethnicity.Applicant must provide evidence that they have effectively conducted surveillance for MD or rare diseases/birth defects and document access to sources needed for surveillance to occur (provide surveillance report or other documentation).For Component B or C:Applicants must demonstrate that they have applied for Component A. Evidence can include a copy of the face page of the application for Component A. |
Additional Information
| Agency Name: | Centers for Disease Control – NCBDDD |
| Description: | The purpose of this NOFO is to conduct longitudinal population-based surveillance of select muscular dystrophies [Duchenne MD (DMD), Becker MD (BMD), myotonic dystrophy (DM), facioscapulohumeral muscular dystrophy (FSHD), limb-girdle MD (LGMD), Congenital MD (CMD), Emery-Dreifuss MD (EDMD), and distal MD] to describe key health outcomes and health inequities, with the goal of identifying opportunities to improve the health of all individuals living with muscular dystrophies. The population included in this surveillance activity can be an entire state or a region within a state, with the applicant utilizing multiple data sources to generate an accurate and complete population-based cohort. Individuals with muscular dystrophy should be identified and followed longitudinally through sources such as neuromuscular, specialty care and other outpatient clinics; administrative data (e.g., vital records, Medicaid/Medicare, hospital discharge); or other sources available to funding recipients. This project will involve three components. Component A (5-7 awards) includes the core surveillance and dissemination activities. Component B (1 award) includes enhanced activities of abstractor training and data quality improvement. Component C (2 awards) is an optional component; awards will be subject to availability of funding.The total estimated funding for Component A is $14,000,000 for 4 years. The total estimated funding for Component B is $400,000 for 4 years. The total estimated funding for Component C is $800,000 over 4 years.Component A objectives include: (1) estimate prevalence of select muscular dystrophies, along with mortality and survival; (2) describe disease progression and co-morbidities; (3) describe healthcare utilization before and after the publication of standards of care, (4) describe access to care and new treatments/health equity; and (5) describe risk factors and protective factors. Component B objectives include: (1) train and provide ongoing training to abstractors in standardized collection of data from medical records and (2) create and implement a plan to periodically assess data quality of abstracted records. The objectives of Component C will be to either (1) develop and evaluate novel approaches to case-finding or longitudinal data collection (e.g., machine learning algorithms, natural language processing automated data extraction/integration), or (2) describe the use of MD-specific ICD-10-CM codes by source. |
| Link to Additional Information: | – |
| Grantor Contact Information: | If you have difficulty accessing the full announcement electronically, please contact:
Kandi Givner
xla7@cdc.gov Email:xla7@cdc.gov |
DISPLAYING: Forecast 1
General Information
| Document Type: | Grants Notice |
| Funding Opportunity Number: | CDC-RFA-DD-24-0064 |
| Funding Opportunity Title: | Surveillance of Muscular Dystrophies |
| Opportunity Category: | Discretionary |
| Opportunity Category Explanation: | – |
| Funding Instrument Type: | Cooperative Agreement |
| Category of Funding Activity: | Health |
| Category Explanation: | – |
| Expected Number of Awards: | 10 |
| Assistance Listings: | 93.073 — Birth Defects and Developmental Disabilities – Prevention and Surveillance |
| Cost Sharing or Matching Requirement: | No |
| Version: | Forecast 1 |
| Posted Date: | Sep 06, 2023 |
| Last Updated Date: | Sep 06, 2023 |
| Original Closing Date for Applications: | – |
| Current Closing Date for Applications: | – |
| Archive Date: | Jun 02, 2024 |
| Estimated Total Program Funding: | $15,200,000 |
| Award Ceiling: | $700,000 |
| Award Floor: | $250,000 |
Eligibility
| Eligible Applicants: | Unrestricted (i.e., open to any type of entity above), subject to any clarification in text field entitled “Additional Information on Eligibility” |
| Additional Information on Eligibility: | The applicant must provide evidence of access to previously collected muscular dystrophy surveillance data from the applicant’s geographic region (describe previous experience and submit table on numbers of individuals with MD). |
Additional Information
| Agency Name: | Centers for Disease Control – NCBDDD |
| Description: | The purpose of this NOFO is to conduct longitudinal population-based surveillance of select muscular dystrophies [Duchenne MD (DMD), Becker MD (BMD), myotonic dystrophy (DM), facioscapulohumeral muscular dystrophy (FSHD), limb-girdle MD (LGMD), Congenital MD (CMD), Emery-Dreifuss MD (EDMD), and distal MD] to describe key health outcomes and health inequities, with the goal of identifying opportunities to improve the health of all individuals living with muscular dystrophies. The population included in this surveillance activity can be an entire state or a region within a state, with the applicant utilizing multiple data sources to generate an accurate and complete population-based cohort. Individuals with muscular dystrophy should be identified and followed longitudinally through sources such as neuromuscular, specialty care and other outpatient clinics; administrative data (e.g., vital records, Medicaid/Medicare, hospital discharge); or other sources available to funding recipients. This project will involve three components. Component A (5-7 awards) includes the core surveillance and dissemination activities. Component B (1 award) includes enhanced activities of abstractor training and data quality improvement. Component C (2 awards) is an optional component; awards will be subject to availability of funding.The total estimated funding for Component A is $14,000,000 for 4 years. The total estimated funding for Component B is $400,000 for 4 years. The total estimated funding for Component C is $800,000 over 4 years.Component A objectives include: (1) estimate prevalence of select muscular dystrophies, along with mortality and survival; (2) describe disease progression and co-morbidities; (3) describe healthcare utilization before and after the publication of standards of care, (4) describe access to care and new treatments/health equity; and (5) describe risk factors and protective factors. Component B objectives include: (1) train and provide ongoing training to abstractors in standardized collection of data from medical records and (2) create and implement a plan to periodically assess data quality of abstracted records. The objectives of Component C will be to either (1) develop and evaluate novel approaches to case-finding or longitudinal data collection (e.g., machine learning algorithms, natural language processing automated data extraction/integration), or (2) describe the use of MD-specific ICD-10-CM codes by source. |
| Link to Additional Information: | – |
| Grantor Contact Information: | If you have difficulty accessing the full announcement electronically, please contact:
–
Email:jgi7@cdc.gov |
Related Documents
Folder 350111 Full Announcement-Full Announcement -> CDC-RFA-DD-24-0064.pdf
Folder 350111 Revised Full Announcement-Revised Full Announcement -> CDC-RFA-DD-24-0064 revised March 15 .pdf
Folder 350111 Other Supporting Documents-Other Supporting Documents -> FY24 NOFO_MD_Surveillance_InfoWebinar_032224.2.pdf
Folder 350111 Other Supporting Documents-Other Supporting Documents -> RESPONSE TO INFORMATIONAL CALL QUESTIONS.DD24-0064.final.pdf
Packages
| Agency Contact Information: | Kandi Givner xla7@cdc.gov Email: xla7@cdc.gov |
| Who Can Apply: | Organization Applicants |
| Assistance Listing Number | Competition ID | Competition Title | Opportunity Package ID | Opening Date | Closing Date | Actions |
|---|---|---|---|---|---|---|
| 93.073 | CDC-RFA-DD-24-0064 | Surveillance of Muscular Dystrophies | PKG00285154 | Apr 23, 2024 | May 08, 2024 | View |
Package 1
Mandatory forms
350111 SF424_4_0-4.0.pdf
350111 Project_AbstractSummary_2_0-2.0.pdf
350111 SFLLL_2_0-2.0.pdf
350111 SF424A-1.0.pdf
350111 BudgetNarrativeAttachments_1_2-1.2.pdf
350111 ProjectNarrativeAttachments_1_2-1.2.pdf
Optional forms
350111 OtherNarrativeAttachments_1_2-1.2.pdf
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