Rare cancer survivorship research funding at the National Institutes of Health (NIH), 2017 to 2023.

Purpose: Rare cancers are defined as those for which there are less than 15 cases per 100,000 in the population annually. While much progress in detection and treatment has been made over the past decade for many rare cancers, less progress has been made in understanding survivorship needs. The objective of this study was to characterize the National Institutes of Health (NIH) cancer survivorship grant portfolio focused on rare cancers and to identify gaps specific to this area of science.

Methods: Newly awarded grants focused on rare cancers in the NIH cancer survivorship research portfolio from Fiscal Year (FY) 2017 to FY2023 were identified. Grant characteristics were abstracted and described. In addition, the number of grants for each rare cancer type was mapped to current Surveillance, Epidemiology, and End Results program incidence and relative survival rates.

Results: A total of 93 survivorship grants focused on one or multiple rare cancer types were funded from FY2017 to FY2023. Approximately 85% of these grants investigated one of four cancer types: leukemia, head & neck, ovarian and brain. Few grants focused on other rare cancer types, such as multiple myeloma (n = 5), testicular cancer (n = 3), rectal cancer (n = 1), thyroid cancer (n = 1), and cervical cancer (n = 0). About half of the grants (50.5%) were observational studies; 34.4% focused explicitly on pediatric cancer survivors.

Conclusions: Survivorship research for many rare cancer types is limited. This paucity of research is a barrier to the identification of survivorship needs and the development of interventions to address these needs.