This Request for Applications (RFA) is focused on improving equity and expediting the early diagnosis of cystic fibrosis through uniformly accelerated newborn screening (NBS) that includes as a priority addressing the special needs of the diverse populations of U.S. infants. However, this RFA is not intended to support projects devoted to clinical trials/interventions.
NBS programs are organized as population-based public health services applying preventive medicine principles in defined regions to reduce morbidity and mortality from genetic disorders by pre-symptomatic detection of risk. The programs use dried blood specimens from newborns analyzed in central laboratories that are linked to clinical follow-up programs for diagnosis and rapid institution of specialized therapies.
The organization of NBS programs features a system of care that includes education, the screening test(s) per se, follow-up, diagnosis, evaluation/management, and quality assurance. The timeliness of diagnosing CF through efficient, equitable NBS can be challenging. Although guidelines for CF NBS published by the Clinical and Laboratory Standards Institute state that the goal is for all infants with CF to be diagnosed and integrated into clinical care systems at CF clinics by 2-3 weeks of age, data stored in the Cystic Fibrosis Foundation Patient Registry have revealed that many states are experiencing delays and not routinely diagnosing CF through NBS during the neonatal period, i.e., the first 28 days of life. The Foundation believes that the timeliness aspect of this care delivery challenge, improvements in equity, and all the other components of the NBS system can be enhanced by quality improvement projects.
Applicants are encouraged to refer to The Standards for Quality Improvement Reporting Excellence (SQUIRE 2.0) revised publication guidelines to see what is required for work on QI-focused projects to be published.
Applicants must be U.S. citizens or U.S. permanent residents (prior to the time of application), actively engaged in CF newborn screening programs, and involved in the second, third, and fourth components listed below:
- Education of professionals and parents
- Screening, i.e., specimen collection, submission and testing
- Follow-up of abnormal and unsatisfactory test results
- Confirmatory testing and diagnosis
- Medical management and periodic outcome evaluation, including treatment monitoring
- System evaluation and quality assurance
Applicant institutions should have a CF Foundation-accredited center or affiliate program.
Applicants may request up to $75,000 per year for two years, plus an additional 12% of indirect costs may be requested per year. Refer to Section III of the Policies and Guidelines for further details regarding funding options.
Policies and Guidelines
Please review the 2023 Policies and Guidelines for complete submission information.
Deadline
Full application: July 10, 2023
All applications must be submitted online at awards.cff.org by 5 p.m. ET on the aforementioned deadline.
For More Information
Those who are interested in any funding programs offered by the CF Foundation may get further information, or discuss the potential relevance of their studies or research by contacting the Grants and Contracts Management and Administration (GCMA) Office at grants@cff.org.
Please Direct Inquiries to:
GCMA Office
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-FIGHT-CF
301-841-2614