Annual Funding Process
Call for Applications
The Histiocytosis Association Research Program operates on an annual cycle. In the first quarter of each year, the Association begins a new cycle with an official announcement that the process is open, typically in May, inviting physicians and scientists to visit histio.org for the Request for Research Proposals (RFRP) guidelines and application. The announcement is directed to thousands of healthcare professionals worldwide via the Association’s website and through email and mail campaigns. The RFRP is also distributed to numerous professional medical services and groups, and other nonprofit organizations, for circulation to their membership, extending the reach of this program as deeply as possible into the world of research and science.
Proposals for scientific research are accepted for studies into the causes, mechanisms, and improved means of treatment for histiocytic disorders. Proposals are evaluated on the basis of science, feasibility, and relevance. All proposals are expected to address one or more of the histiocytic disorders; below are areas of particular interest; however, all relevant areas of interest are considered.
- Mechanisms of disease pathogenesis
- Biology (maturation, migration and immune function) of dendritic cells, macrophages and/or lymphocytes in disease pathogenesis
- Derangements of cytokine production or function
- CNS pathology
- Neuropsychiatric consequences
- Studies of rare forms -- Juvenile xanthogranuloma, Erdheim-Chester disease, Rosai-Dorfman disease
- Studies of histiocytic disorders in adults
- Discovery of new disease markers
- Overall support of clinical trials
Once the announcement regarding the Request for Research Proposals is made, interested parties should read the Research Grant Guidelines and Terms & Conditions before beginning the request for funding process. To apply for a grant, applicants must create a username and password specifically for the grants area of the Association's website. Applicants should keep this log-in information in a secure place as it will be required to access the application page in the future. The application includes a listing of current areas of interest within the field of histiocytic disorders; however, any and all projects that focus on these rare diseases are encouraged and welcomed. While applications may vary in length, scope and topic, all must include the following information:
- Applicant Data – the contact information and institutional affiliation(s) for the primary investigator and any secondary investigators
- Project Information – the title of the project and amount of funding requested
- Problem Formulation – a basic description of the question the project seeks to answer
- Specific Aims – the detailed data for the research project, including background and significance, preliminary work and findings, the precise research plan, and the importance of such research
- Lay Summary – a synopsis that explains the research plan in ordinary, non-scientific terms; the Association uses this narrative to report to its non-medical Board members, as well as email subscribers
- Budget – a financial plan that describes how each dollar of the requested funding would be used
- Bibliographical Sketch – a detailed history of the work and employment of the applicant or applicants
- Other Support – any other forms or sources of funding that will, or might, support the project
Evaluation and Peer Review Process
Grant applications then face an extensive evaluation and peer review process, modeled after that used by the US National Institutes of Health (NIH). This process ensures an impartial and transparent approach to grant funding through “a process that is fair, equitable, timely, and conducted in a manner free of bias”.
A scientific peer review process is based on the concept that a large and diverse group of physicians not directly associated with a specific project are best able to identify the strengths, weaknesses and errors of that project; assess its significance and potential impact; and are thereby better able to make an impartial evaluation.
The Histiocytosis Association’s peer review process utilizes the leading experts in the field of histiocytic disorders – the Scientific Committee of the Histiocyte Society – an elite group of physicians and scientists from around the world. The Society’s Scientific Committee reviews and scores the research grant applications received by the Association based on scientific merit, relevance and feasibility.
Through the peer review process, the Association can ensure its donors that their funding is being used to support the most promising and scientifically valid research. The Association’s commitment to the peer review process reflects the organization’s commitment to the histiocytosis community to uphold the values of fairness, transparency, and accountability in all of its activities.
Following its review of grant applications, the Histiocyte Society’s Scientific Committee makes funding recommendations to the Histiocytosis Association’s Board of Trustees. The Trustees then analyze the applications based on several additional criteria, including:
- Assessment of other funding already awarded and potentially capable of supporting the proposed work, as well as overlapping funding, if any
- Provision of seed funding for work that subsequently could be eligible for major funding by other organizations such as the NIH or equivalent agencies in Europe, etc
- Maintenance of the balance between new applicants and applicants who have previously received support from the Association, in order to encourage the entry of new investigators and important ideas into the field of histiocytic disorders
- Observance of a balance of strategic priorities among the various histiocytic disorders
The Association’s Board of Trustees then determines which applications will be approved for funding. This multi-step process ensures that each project is both scientifically sound and aligned with the Association’s mission.
In order to avoid potential conflicts of interest within the evaluation system, members of the Histiocyte Society’s Scientific Committee associated with an application are prohibited from review and discussion of that particular application. In addition, members of the Histiocytosis Association Board of Trustees associated with any application are excluded from the entire review and funding approval process for that year.
It is also important to note that through this process, it is desirable that the funds awarded by the Association act as "seed funds" to encourage recipients to pursue future grant applications to larger funding organizations, such as the NIH or government health ministries.
Resolution to Fund Research
Once the Association’s Board of Trustees confirms the applications that will receive funding, a formal resolution is passed to award research grants for that fiscal year. The number of grants awarded and the amount of funding varies from year to year, based on the quality of eligible applications and the availability of funding. Occasionally, other histiocytosis-related organizations, such as the Histiocytosis Association of Canada, collaborate with the Association to provide funding for a project, ensuring that projects identified as having the highest priority are funded appropriately.
Funding Acceptance and Compliance
Once the Association’s Board of Trustees passes a Research Funding Resolution, applicants (hereafter referred to as investigators) are notified of their proposal’s acceptance or denial. The investigator must then sign a formal Funding Acceptance Agreement stipulating the terms and conditions of the grant award, including, but not limited to, the following:
- Funds received from the Association must be used specifically as defined in the original Grant Application; should the nature or scope of the project alter from its original intended use, the investigator must submit a written request for approval to the Association justifying the proposed changes.
- A written progress report must be submitted to the Association six months after the project’s start (based on the date funding is received), and then again at the conclusion of the project (anticipated to be one year after the project’s start). The annual report must also include a version written in layman's terms. If, for any reason, a report cannot be submitted, the investigator must petition the Association, in writing, for an extension to submit the report at a later date. Should reports not be received on time, funding must be forfeited and returned.
- Any and all results, findings, and/or conclusions culminating from Association-funded research must be made public; this is required in order to facilitate the sharing of learned knowledge.
- Any published material or presentations referring to the information resulting from Association-funded research must acknowledge the support of the Association.
- The funding period for a grant is one year. However, at the completion of the grant, upon review of the results, and provided the investigator can substantiate the need for and value of further scientific inquiry into the results of the project, then he/she is encouraged to submit an application for further funding, upon announcement of availability of Association grant funds.
- Investigators are strongly encouraged to present the project’s conclusions and findings at an Annual Meeting of the Histiocyte Society.
- Once a Funding Acceptance Agreement is signed by the project investigator and returned to the Association, an award check is issued and disbursed to the institution in which the research will take place. The Annual Grant Funding Process, from announcement of the Request for Research Proposals to the writing of the checks, is a yearlong cycle that culminates with funding being distributed in December.