Progress Grant for NMOSD

The Siegel Rare Neuroimmune Association’s Eclipse Fund for research is excited to share the establishment of The Progress Grant for NMOSD made possible by a research grant from Horizon Therapeutics. Dr. Sammita Satyanarayan from the Icahn School of Medicine at Mount Sinai is being awarded $25,000 for her research study entitled, “Assessing the impact of social disparities of health on disability and access to care in NMOSD patients.” The goal of this project is to understand how social disparities of health can impact access to care and clinical disability in order to effectively prevent significant morbidity and mortality in NMOSD patients. Social, behavioral, economic, and environmental differences among individuals may impact the clinical care and quality of life with NMOSD, particularly in African American and Asian populations.

Purpose

The Eclipse Fund in memory of Pauline H. Siegel was established to support and accelerate research that will directly impact quality of life for the members of our community.

The aim of this grant is to fund research aimed to improve understanding of neuromyelitis optica spectrum disorder (NMOSD) focused on specifically Asian and African American populations. In studies on NMOSD, we see that this disorder disproportionately affects those who are Black or Asian, unlike MS, which is more common among those who are White. Also, Black and Asian patients seem to be younger at onset and have more brain symptoms or MRI abnormalities than White patients.

The purpose of the Progress Grant for NMOSD is to help the broader NMOSD community understand how to improve diagnosis, treatment and quality of life of people with NMOSD. Research projects may focus on access to care, mental and psychosocial aspects of living with NMOSD, clinical differences, improving diagnosis and clinical care, therapeutics, or basic science projects.

Award

Eligibility

Application Dates

Application Process

Proposals submitted through the online form should provide a detailed description of the research or clinical project that will be partially or fully supported by the grant and a budget providing details of the estimated costs. Proposals are reviewed by our basic and clinical scientists and experts on SRNA’s Medical and Scientific Council. Additional expertise may be sought from ad-hoc reviewers to ensure comprehensive scientific review. Applications will be reviewed based on innovation, scientific rigor and alignment with the goals of the grant. Potential conflicts of interest for reviewers and applicants must be mentioned in the application and declared prior to the review and will be recused from the review process.

Recommendations for funding are made to the Board of Directors of SRNA. The final approval for funding is provided by the Board.

Additional Guidelines

Publications and Reporting Requirements

As reporting requirements, SRNA would require two articles (as six-month reports) for SRNA’s Magazine, which describe the progress and findings from the research. We also require a final report be submitted detailing the expenditure of the funds and a short summary that we will publish on the SRNA website. SRNA should be acknowledged in any publications of research results that were supported by the grant.

Public Access Policy

The Siegel Rare Neuroimmune Association funds clinical and biomedical research in order to better understand the causes of Acute Disseminated Encephalomyelitis, Acute Flaccid Myelitis, MOG Antibody Disease, Neuromyelitis Optica Spectrum Disorder, Optic Neuritis, and Transverse Myelitis; and to advance early diagnosis, treatment, and cures. The main output of this research is new knowledge. To ensure this knowledge can be accessed, read, applied, and built upon in fulfillment of our goals, the Siegel Rare Neuroimmune Association expects its researchers to publish their findings in peer-reviewed journals.

In addition, it is a condition of the Siegel Rare Neuroimmune Association’s funding that a copy of all funded research outputs, in the form of final, peer-reviewed manuscripts, must be delivered to the Siegel Rare Neuroimmune Association upon acceptance. These manuscripts will be made publicly available on the Siegel Rare Neuroimmune Association website no later than 12 months after the official date of publication.

This requirement applies to all Siegel Rare Neuroimmune Association grants awarded after January 1, 2012.

The policy is developed with the Scholarly Publishing and Academic Resources Coalition (SPARC) and is based on the policy developed by Autism Speaks, with that organization’s permission.