What is RFRF Looking For in a Grant Application?

The mission of Rosenau Family Research Foundation (RFRF) is to improve the lives of patients impacted by Krabbe disease and Cystic Fibrosis through research funding and disease advocacy, and to help individuals live life undefined by Krabbe disease and Cystic Fibrosis. RFRF Marketing Director, Rachel Jackson (RJ) recently spoke with RFRF Executive Director, Dr. Gabriel M. Cohn (GMC), to learn more about the Foundation’s research funding.

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RJ: How does RFRF fund research?
GMC: RFRF has a competitive grants program that is vital to the Foundation’s mission of improving the lives of those impacted by Krabbe disease and Cystic Fibrosis.

RJ: What types of research proposals are considered for funding?
GMC: We will consider research proposals in basic science research, translational research, and clinical research that align with our mission. As such, grants that can lead to a better understanding of Krabbe disease or Cystic Fibrosis or that can enhance treatments and cures for Krabbe disease and Cystic Fibrosis will always be our highest priority. In addition, programs that promote, through education and awareness, the expansion of Newborn Screening, Krabbe disease, and Cystic Fibrosis, will be similarly considered.

RJ: Who is eligible to receive funding?
GMC: Currently, only organizations that meet 501(c)(3) tax-exempt status or 509(a) status, are eligible to receive funding through our program. In addition, we provide funding for established investigators of such organizations as well as new investigators (those that are either still in school or in training).

RJ: When and how can someone who is interested in receiving a grant apply?
GMC: In the past we solicited grants on an annual basis. This year, we’ve successfully transitioned to a semi-annual application cycle, one in the Fall and another in the Spring. We’ve noticed a 70% increase in interest, which is very exciting! The grant application cycle begins with completion of our online Letter of Inquiry (LOI) form, a link to which can be found on our website. The Fall grant funding cycle begins with a call for LOIs on November 1. The deadline for LOI submission is January 31. The Spring grant funding cycle begins with a call for LOIs on May 1 with a deadline for submission of July 31. Following review of the LOIs, some applicants will be invited to submit a full grant application. Notification to submit the full grant application is 16 days after the LOI submission deadline: so, February 16 for the Fall funding cycle and August 16 for the Spring cycle. The full application is then due approximately 3.5 months later: so, June 1 for the Fall cycle and December 1 for the Spring funding cycle (see table on RFRF Grants Page)

RJ: What is the applicant expected to provide in the LOI form?
GMC: The LOI form asks that the applicant describe the purpose of the project, key hypothesis, specific aims, key experiments, anticipated outcomes, annual objectives, timelines, and budget. We ask about the relevance of the findings if the proposed hypothesis is confirmed and the significance of the findings if the findings are not supportive of the proposed hypothesis.

RJ: How is the LOI reviewed by the Foundation?
GMC: Each LOI is reviewed by a member of the Foundation’s Scientific Advisory Committee (SAC). To limit any potential bias, the reviewer is blinded to the applicant’s name and institution, so the reviewer sees and evaluates the content of the LOI that is specific to only the proposed project itself. The reviewer then scores each section from 0-2 with 2 being satisfactory, 0 being unsatisfactory, and 1 being somewhat satisfactory. A total score is then generated along with any reviewer comments and recommendations for or against inviting the applicant to submit the full grant application. Applicants whose LOIs received the highest scores along with recommendations to proceed to the full application phase are then invited to submit the full grant application. The full application, like the LOI, consists of an on-line form.

RJ: What is the difference between the LOI and the full application?
GMC: The LOI serves as more of a high-level summary of the proposed project whereas the full application asks the applicant to elaborate upon each section and provide greater detail, particularly in areas related to background and experimental approach and design.

RJ: Is the review of the full grant application similar to the review of the LOI?
GMC: There are similarities and differences.

  • The key similarities between the LOI and full application are first, they both include a blinded scientific review. The scientific reviewer is blinded to any of the applicant’s identifiers as we want to make this process as free as possible from any potential bias. Secondly, both review processes are standardized, meaning that each LOI and each full grant application is reviewed and evaluated against the same set of criteria and standards. By applying the same set of standardized criteria in the review of each application and by blinding the identifiers in the scientific review, we hope to make this process as fair, objective, and impartial as possible.
  • Beyond these two similarities, there are some very significant differences. Unlike the LOI review, which is a single review, the full application review involves several steps:
    • Initially, the full grant application is reviewed for scientific merit in a blinded fashion. A SAC member is asked to review the content specific to the proposed project itself while being blinded to any of the applicant’s identifiers. The reviewer provides a score for each section of our scientific review scorecard.
    • Once the blinded scientific review is completed, that evaluation is locked, and the SAC member performs a feasibility review. This consists of a review of the applicant’s qualifications, the qualifications of any collaborators, mentor support if applicable, and the approval and support for the proposed project by the applicant’s institution and relevant departments, such as animal safety, IRB etc. In addition, timelines, budget, and budget justification are also reviewed. As with the scientific review, the reviewer provides a score for each section of the feasibility review scorecard.
    • The scientific review score represents 65% of the weighting while the feasibility review score represents 35% of the weighting. While both elements are critically important, it is essential that each funded application be scientifically robust.
    • Once all the grants have gone through the formal review and scoring process, the SAC convenes to further review and discuss each proposal in detail. Based on those discussions, grants are ranked and prioritized along with recommendations relative to funding. Copies of the LOIs, the full grant applications, the LOI and grant application evaluations, as well as the SAC’s ranked list and SAC recommendations are disseminated to the Foundation’s Board of Directors (BOD). The BOD meets and discusses each cycle’s grant applications and the SAC recommendations and provides the final determination as to which grants will receive funding and whether any adjustments to the grant or budget are required.

RJ: How do the reviews by the Foundation’s SAC and BOD differ?
GMC: The SAC is comprised of individuals with expertise spanning biochemistry, newborn screening, basic science, translational medicine, clinical development, clinical trials, clinical practice, clinical genetics, drug development, genetic therapeutics, public health, Krabbe disease and Cystic Fibrosis. Their backgrounds also include work in academia, the biotech industry, governmental agencies, and the non-profit sector. As such, this group is invaluable in providing the expertise required in the technical review of the grant applications from both a scientific and feasibility standpoint. In addition, the SAC also provides perspectives as to how a particular proposal fits within the disease landscape and fits in relationship to The Foundation’s mission. The RFRF Board, with its more diverse background, views the grant applications and SAC recommendations from a broader perspective, finalizing prioritization based not only on the SAC reviews and recommendations, but also on the Foundation’s mission, strategic and functional priorities, as well as the Foundation’s financial standing.

RJ: What should those interested in applying for an RFRF grant know about the Foundation’s funding priorities and chances of getting approved?
GMC: Applicants should be aware of several considerations that can significantly improve their chances of receiving funding. First, the goals of the application must align with the Foundation’s mission. Second, given the backgrounds of the members of our SAC, the scientific and feasibility reviews are incredibly rigorous. This means that the background supporting a given hypothesis must be well substantiated and that the proposed experimental design and methodology be meticulously detailed to demonstrate to our reviewers that that the proposed project is appropriately designed to confirm or reject the proposal’s hypothesis. Unlike NIH grants, we do not require volumes of preliminary data, however some preliminary data based on prior publications, and/or some investigator generated findings, along with sound arguments in support of the rationale for the proposed hypothesis is required. Third, as we view the funding of these competitive grants as an investment in improving lives, the applicant must demonstrate sufficient care in the handling of these funds by identifying potential risks to the successful conduct of the study and should also be able to articulate risk mitigation strategies. Furthermore, as with any well thought out study, the results of a proposal, whether supportive of the proposed hypothesis or not, should lead to enhanced knowledge and move the field forward. The applications that provide the highest return on our research funding investment and are most deserving of funding are the ones that can clearly articulate how the lives of those impacted by Krabbe disease or Cystic Fibrosis will be enhanced regardless of the study’s outcome. Finally, it is critical that the application include documentation supporting the investigator’s and the collaborators’ qualifications to perform the planned project and provide documentation of the institution’s support for the proposal. In the case of new investigators (individuals still in school or in training) support from a qualified mentor is also essential.

RJ: Do you have any final thoughts you’d like to share?
GMC: What makes our grants program unique and exciting, is that we fund new and innovative projects that are scientifically rigorous but require initial funding not typically available through such organizations as the NIH. If successful, the data generated from these programs can lead to funding which will allow such programs to fully develop and mature. This approach has led to several successful research programs including two gene therapy products that are being investigated in clinical trials, improvements in newborn screening for Krabbe disease and Cystic Fibrosis and studies that have led to a deeper understanding of both Cystic Fibrosis and Krabbe disease. In addition, our program also supports the research of new investigators in these fields with the hope that they will become the research leaders of tomorrow. This is truly an investment in the future, and one that’s worthy of consideration by all those who work in these fields.