There are a multitude of use cases for the Cystic Fibrosis Foundation Patient Registry data, including research to further knowledge of the natural history of cystic fibrosis, estimate the real-world effect of therapies, and quantify CF health care utilization. In the era of modulator therapy and future genetic therapies, there is a need for additional research in the utility of novel methods in the analysis of Registry data across a broad range of research areas, not limited to:
- the appropriate choice of comparator populations
- the impact of selection bias (missing data, loss to follow-up, etc.) on estimation of treatment effects
- the impact of reduced frequency of CF care utilization on estimation of population-level summary statistics
This request for applications (RFA) with a letter of intent (LOI) request will increase our understanding of the strengths and limitations of Registry data to help guide the investigator community in the design and implementation of future studies. The CF Foundation is interested in reviewing applications that cover a broad range of methodological approaches, including (but not limited to) causal inference and simulation methods.
Please note: This is a one-time RFA with an LOI. Full applications will be solicited by invitation only after review of the LOI.
The goal of this RFA with LOI is to identify innovative Registry research projects considered relevant to advancing knowledge of CF and to encourage junior investigators (defined below) with expertise in statistics or epidemiology to engage in CF research. Areas of encouragement to address research for specific aspects of CF disease that are of interest are also found below.
Definition of a Successful Project
A successful project will use novel methods to address a CF-related research question and demonstrate the utility of a given method for a broad audience of statisticians and clinical researchers. Awardees are expected to publish the results of their research in the peer-review including analytical code or tutorials to enable replication. Awardees must present their research to the Foundation’s Comparative Effectiveness Research Committee before the end of the project.
A limited number of LOIs will be invited to submit full applications. Applications that do not specify how the project can benefit people with CF and advance registry-based research and/or are deemed nonresponsive to areas of interest will not be invited for a full application. Work in this space will inform future grant offerings and is intended to be shared broadly with the CF community.
- Candidates must be U.S. citizens or U.S. permanent residents (must have obtained permanent residency prior to the time of application).
- Junior investigators are encouraged to apply as the intent of the funding mechanism is to encourage investigators with experience using advanced methods in biostatistics or epidemiology to pursue cystic fibrosis research.
- The lead principal investigator (PI) must have prior training in epidemiology or biostatistics with a focus on secondary analysis of longitudinal observational data and hold an academic faculty or postdoctoral fellowship position. Individuals with a postdoctoral fellowship appointment must have a pending faculty appointment or be otherwise able to demonstrate sufficient support to allow for completion of the project.
- Current recipients of Shwachman, StatNet, or other Foundation-funded grants intended to support career development may apply in their final year of the award.
- A clinician with experience in CF should be included on the study team. If the lead PI is not a clinician with CF experience or has not previously engaged in CF research, then a CF clinician must be named as either co-PI or consultant with at least 5% effort on the project.
Industry-sponsored research projects are not eligible to apply through this program and instead should consider applying to the Therapeutics Development Awards program. For additional information, please contact email@example.com and copy Elizabeth Cromwell at firstname.lastname@example.org.
Applicants may request funding of up to $150,000 per year for up to two years, plus an additional 12% indirect costs.
Areas of Encouragement
The Cystic Fibrosis Foundation regularly assesses its key research priorities to ensure we are on track to accomplish our mission to cure CF and to provide people with CF the opportunity to lead long lives. Applicants are encouraged to align submissions to these priorities to maximize their potential for being funded.
Policies and Guidelines
Please review the 2023 Policies and Guidelines for complete submission information.
All letters of intent and full applications for 2023 must be submitted online at awards.cff.org by 5 p.m. ET.
Letter of Intent: August 9, 2023
Full application: November 14, 2023
For More Information
Those who are interested in any funding programs offered by the 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 email@example.com.
Please Direct Inquiries to:
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814