Additional Information for CDC-RFA-DD-24-0065: Surveillance of Spina Bifida Across the Lifespan

Proposed Data Elements for CDC-RFA-DD-24-0065: Surveillance of Spina Bifida Across the Lifespan

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Informational Call

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Funding Opportunity: Surveillance of Spina Bifida across the Lifespan
Opportunity Number: CDC-RFA-DD-24-0065
Federal Assistance Listing: 93.07

DRAFT Data Elements (subject to change)

CDC-RFA-DD-24-0065 – Surveillance of Spina Bifida across the Lifespan solicits non-research, cooperative agreement applications to conduct a project to identify a population-based sample of children and adults with spina bifida to estimate the prevalence and describe key outcomes with the goal of identifying opportunities to improve the health of individuals living with spina bifida. Below are draft data elements referenced in Strategy 2: Data Management and Reporting.

Spina Bifida Diagnosis
- Spina bifida type
- Diagnosis year
- Level of Lesion
Sources of Care
- Data source
- Facility type
- Provider type
- Encounter type
- Age at encounter
Socio-demographics
- Birth year
- Zip code of residence at birth
- Birth country
- Zip code of residence at last documented visit
- Race
- Ethnicity
- Assigned sex
- Gender
- Insurance type/status
- Employment status
- Social Determinants of Health (matched locally at census tract level)
- Language spoken at home/primary language (if unable to collect at individual level, could link to census/SDOH indicator data)
Mortality/Survival
- Cause of death
- Age at death
- Data source
Comorbidities/Health Outcomes and age at event in years
- Hydrocephalus
- Epilepsy
- Obesity
- Chronic Kidney Disease
- Neurogenic bladder
- Skin breakdown
- Bowel Incontinence
- Bladder Incontinence
- Osteoporosis
- Sleep Disorder
- Psychiatric diagnoses
Routine health screenings and age at event in years (e.g. lead, mammogram, colonoscopy, metabolic screening, diabetes screening)
Spina bifida specific health screenings and age at event in years (e.g. Dexa Scan, sleep study, kidney ultrasound)
Vaccinations (e.g. child and adolescent Immunizations and Adult Immunization Schedule by Age | CDC) and age at event in years
Surgeries/procedures and age at event in years
- Fetal surgery
- Any shunt procedure (treatment of hydrocephalus through shunt placement and shunt revision)
- Other surgeries and procedures
Medications and age at event in years
- Antibiotics
- Antiepileptic medications
- Anticholinergic medications
- Bladder medications
- Bowel medications
- Psychiatric medications

Frequently Asked Questions

Informational Call

A: There will only be one application per organization. Applicants submitting applications to both components A and B will only submit one application. If applying to both components A and B, you must include the 5 main elements for each component (see pages 31 – 37)

A: If applying to both Components A and B, applicants are allotted 20 pages for each component for a total of 40 pages for the application.

A: Each site will be responsible for maintaining data from all sources used to create a standardized, anonymized spina bifida dataset for submission to CDC (see page 14).

A: Please find draft data elements at Proposed Data Elements for CDC-RFA-DD-24-0065: Surveillance of Spina Bifida Across the Lifespan | CDC.

A: 12-point Calibri font for the application; tables, footnotes and text in graphics may be 10-point (see page 31).

A: You must submit letters of support, MOUs, MOAs, or DUAs for any proposed data sources (see page 19).

A: CDC will work with sites to finalize the data dictionary. Please find draft data elements at Proposed Data Elements for CDC-RFA-DD-24-0065: Surveillance of Spina Bifida Across the Lifespan | CDC.

A: Four will be the maximum number of awards.

A: Geocoding addresses will be implemented by the sites to be able to link to Census data on social determinants of health (SDOH) and examine topics such as distance to healthcare locations (see page 14). Project sites will send CDC standardized, anonymized datasets. Anonymized datasets will not include addresses or geocodes that would be considered identifiable.

A: Applicants can propose an approach to identifying how they will determine if individuals with spina bifida have moved in or out of the catchment area.

A: The page limit is for each component; 20 pages is the limit for the project narrative, total of 40 pages if applying to both Components A and B.

A: Information can be included in the narrative; you must also submit letters of support, MOUs, MOAs, or DUAs for any proposed data sources (see page 19).

A: No. The data collected will be over a 5-year period from 2019 to 2024.

A: The data will be submitted at least once a year. CDC will work with project sites to determine the frequency of data submissions after funding (see page 14).

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A: CDC will work with sites to finalize the data dictionary. Please find draft data elements at Proposed Data Elements for CDC-RFA-DD-24-0065: Surveillance of Spina Bifida Across the Lifespan | CDC

A: Spina bifida occulta will not be included in this project (see page 13).

A: Please see the list of proposed data element for examples of the clinical and administrative data to be collected under Strategy 1 (page 13). Proposed Data Elements for CDC-RFA-DD-24-0065: Surveillance of Spina Bifida Across the Lifespan | CDC

A4: See examples of collaborations on pages 18 – 19. The collaborations need to be described and you must submit letters of support, MOUs, MOAs, or DUAs for any proposed data sources (see page 19).

A5: The award amounts are total cost.

A: Under Component A Strategy 1 (see page 11) indicates you will need to use state birth defects surveillance system and vital records data and “identify and use additional clinical and administrative data sources to collect information on SB health status and long-term outcomes”. Applicants can propose other data sources which could include data from individual spina bifida clinics that participate in the National Spina Bifida Patient Registry (NSBPR) and indicate how the data source will be accessed and linked with other data sources (Strategy 2, see page 11).

A: Please see page 18 for how to demonstrate authority. You must also submit letters of support, MOUs, MOAs, or DUAs for any proposed data sources (see page 19).

A: Please see eligibility on page 7; all eligible organizations can apply.

A: There is not a specific percentage level of effort required to have someone serve as a Co-PI. The proposed LOE (either billed to the award or cost-shared) for that investigator would have to be commensurate with the activities that they are to carry out as proposed in your budget narrative.