Advancing Craniosynostosis Treatment (ACT) Rare Diseases Consortium Pilot Study Program

Application Process
Completed electronic applications must be submitted to https://grants.rarediseasesnetwork.org  by 11:59pm PT on April 15, 2026. The program will start accepting applications on February 9, 2026. Proposals will undergo initial administrative review for assessment of completion and relevance. After administrative review, proposals will undergo peer review in a fashion analogous to NIH study section.

The Advancing Craniosynostosis Treatment (ACT) Rare Diseases Consortium invites proposals for pilot research projects focused on advancing diagnosis, clinical trial readiness, and management and treatment of syndromic craniosynostosis. This pilot funding opportunity is intended to support early-stage, high-impact projects that generate preliminary data, validate novel concepts, or de-risk innovative approaches with strong potential for downstream translational, clinical, or commercialization impact. Projects supported through this pilot program should align with the broader mission of the ACT Rare Diseases Consortium and complement and/or expand upon the research activities of Clinical Project 1, Clinical Project 2, and Clinical Project 3.

Proposed projects should address one or more of the following areas relevant to syndromic craniosynostosis and complement/expand on Clinical Projects conducted by the ACT Rare Diseases Consortium. Clinical Project 1 aims to study the longitudinal natural history of syndromic CS. Clinical Project 2 aims to study surgical treatment outcomes of syndromic CS after cranial vault remodeling. Clinical Project 3 aims to study surgical treatment outcomes of syndromic CS after midface advancement. The list below is not exhaustive.

Projects should be feasible within the proposed project period and budget and clearly articulate the pilot nature of the work.

The ACT Rare Diseases Consortium expects to fund one grant at a level of up to $80,000 (total costs). Projects will be funded for 12 months, with an expected start date of June 1, 2026. Selection among the applications received will be based on the recommendations of the Steering Committee and 2–5 ad hoc reviewers. 

Proposals must include the following components:

The PI must be based at a US-based academic institution or research institution. The PI must hold a doctoral-level degree or be enrolled in a doctoral-level program.

 

Proposals will be evaluated by a scientific review committee based on the following criteria: 

Awardees will be expected to meet with the ACT Steering Committee and Pilot Core to establish milestones and assess satisfactory progress toward on a monthly basis. All funded projects will abide by the data sharing and human subject regulatory requirements described in the NIH Delayed Onset Studies guidance (https://grants.nih.gov/grants/how-to-apply-application-guide/forms-i/general/g.500-phs-human-subjects-and-clinical-trials-information.htm#Delayed). 

 

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