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Advancing Craniosynostosis Treatment (ACT) Rare Diseases Consortium Pilot Study Program Cycle 2

Autoimmunity, Rasmussen’s, Inflammation & Status Epilepticus Research Network (ARISEN)

Application Process
Completed electronic applications must be submitted to https://grants.rarediseasesnetwork.org by 11:59pm PT on January 31, 2027. The program will start accepting applications on September 15, 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.

Program Overview and Background

The Advancing Craniosynostosis Treatment (ACT) Rare Diseases Consortium (https://act.rarediseasesnetwork.org/) 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.

Objectives of the Pilot Program

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 and should be clinical in nature. 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.

Disease mechanisms, pathophysiology, or target identification
Biomarker discovery or validation
Therapeutic development (e.g., drugs, biologics, cell/gene therapies, devices)
Diagnostic or prognostic tools
Data science, AI/ML, or digital health approaches

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

Project Period and Funding Level

The ACT Rare Diseases Consortium expects to fund one grant at a level of up to $40,000 (total costs). Projects will be funded for 12 months, with an expected start date of June 1, 2027. Selection among the applications received will be based on the recommendations of the Steering Committee and 2–5 ad hoc reviewers.

Application

Proposals must include the following components:

Research plan (3 pages maximum)
- Specific aims
- Significance
- Innovation
- Approaches
NIH bio-sketch for key personnel
NIH PHS 398 Detailed Budget and budget justification with any proposed cost-sharing commitment
Human subjects and other institutional assurances to perform the intended research including a specific verification of investigator protected time to perform the study
Letters of support (optional)

Review and Evaluation Criteria

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

Scientific merit and relevance
Alignment with RDCRC goals and resource utilization
Potential to advance the field and syndromic CS diagnosis and treatment
Milestone-driven approach
Promotion of new collaborations and investigator development

Award and Reporting Requirements

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).

Important Dates

Proposal portal opens: September 15, 2026
Proposal submission deadline: January 31, 2027
Anticipated award notification: May 1, 2027
Project start date: June 1, 2027

AI Based Application Success Predictor

Predictor	Relevance to grant success
Alignment with ARISEN's disease priorities	Research must address one or more of the consortium's target diseases.
Clinical or translational relevance	Projects should address clinical research gaps rather than animal-only studies.
Scientific significance and innovation	Strong rationale, novel research questions, and potential to advance understanding or treatment.
Methodological rigor and feasibility	A sound study design, realistic timeline, milestones, and achievable objectives.
Patient-oriented impact	Potential to improve diagnosis, treatment, prognosis, or patient outcomes.
Preliminary data and future funding potential	Ability to generate evidence supporting subsequent external funding applications.
Multidisciplinary collaboration	Collaboration across research centers and relevant clinical specialties.
Patient engagement	Meaningful involvement of patients, caregivers, or patient advocacy groups.
Research team and environment	Appropriate investigator expertise, mentoring when required, and access to research resources.
Impact and sustainability	Measurable outcomes and a credible plan for continuing the research beyond the pilot award.

These predictors reflect ARISEN's published research priorities and peer-review criteria; they are not a statistically validated ranking of historical award-winning factors.

arisen.rarediseasesnetwork.org

Grant and organization classification

Category	Details
Organization type	U.S. federally funded research consortium
Funding source	NIH, including NCATS and NICHD
Grant programs	ARISEN Pilot Research Grant; Early-Stage Investigator Pilot Research Grant
Maximum award	Up to $45,000 total costs for the published pilot programs
Project duration	12 months
Historical success rate	Not verified; applicant counts and comparable award data are needed
Official website	ARISEN Funding Opportunities

The 2027 funding announcements list a letter-of-intent deadline of November 13, 2026, with full applications due in February 2027. The pilot grant permits one award, subject to funding approval.

arisen.rarediseasesnetwork.org

Excel-ready entry — Previous Success Predictors: Disease-area alignment; clinical and translational significance; scientific innovation; methodological rigor; preliminary data; patient-oriented research; multidisciplinary collaboration; patient advocacy involvement; investigator expertise; feasibility; measurable outcomes; sustainability; and potential to secure future external funding.

Specialties

Rare Diseases

Eligibility Requirements

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

Eligible Countries:

United States

Sponsor Details

Sponsor Institute/Organizations: Autoimmunity, Rasmussen’s, Inflammation & Status Epilepticus Research Network (ARISEN)

Sponsor Type: Corporate/Non-Profit

Address: 3333 Burnet Ave, Cincinnati, OH 45229,

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