We believe in Team Science and the ability to easily provide resources for approved investigators.
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“Data sharing is essential for expedited translation of research results into knowledge, products, and procedures to improve human health. ”
— National Institute of Health
Apply for Funding
We are accepting RFPs. Please contact us at info@project8p.org.
We are committed to sharing biospecimens, cell lines, animal models, and de-identified data.
Strategic Partners
We are eager to be a strategic partner at the onset of assessing markets for drug development and determining feasibility. The US FDA and international regulatory agencies are incentivizing orphan drug development in many ways that allow expedited approval, greater flexibility in clinical trials, and more innovation in the process.
Please contact us at info@project8p.org.
Chromosome 8p Registry and Biorepository Requests
The following step represent the process to review and approve investigators interested to ensure studies benefit people with chromosome 8p disorders or related disorders.
- Contact the priniciple investigator Bina Shah via email at bina@project8p.org to request the complete set of instructions and procedures.
- We will have a discussion with you about the research concept and review the resources and procedures.
- The investigator develops and submits a title, abstract, research proposal (below). In the future, we will have an electronic form for you to submit.
- Investigators will submit their IRB approval or exemption document.
- Investigators will execute a Data Use Agreement with the Project 8p Foundation.
The appropriate committee at Project 8p Foundation will approve the proposal based on the review criteria (below). Based on the Committee’s decision, there may also be an opportunity for the investigator to revise their initial proposal with feedback.
Review Criteria
When reviewing a proposal, the committee members are asked to consider the extent to which the proposed research meets the following criteria. The committee recognizes that some of these criteria will not apply to all research proposals.
- Research focuses on issues and concerns that are known or believed to be considered important by people with chromosome 8p or related disorders.
- Research is scientifically rigorous.
- If applicable, new data is feasible to collect (for proposals that involve obtaining additional data not already collected via the Chromosome 8p Registry).
- Research has the potential to definitively answer an important question.
- The willingness of the investigator to publish and share their findings with the broader scientific community
- For biospecimens only: The ability to successfully complete a material transfer agreement (MTA) with the Project 8p Foundation. Additionally, the type of samples requested and the quantity available may determine whether biospecimens are transferred.
Data sharing policies
The Project 8p Foundation aims to provide its resources readily, meaning that we will work with any investigator, at any institution, anywhere in the world who is conducting valid research that is in alignment to our mission of finding treatment and improving quality care for chromosome 8p disorders.
Pricing Structure
Pricing for studies using Chromosome 8p Registry data, samples, and other resources is based on the level of effort associated with the study and can include recovery of costs incurred to create existing resources as well as the projected costs of study-specific efforts. Please contact us for more information including estimates.
Human Rights Protection resources. Please click below:
The Office of Human Research Protections (OHRP) Education and Outreach(link is external)
The NLM: Bioethics Information Resources
Genotype Phenotype Data sets
We are happy to share all the data sets and models we have put together. We have HPO and OMIM mapped genes impacted in Chromosome 8p as well as other tools we can develop to support your research or clinical interests.
Please visit the free NDD CNV Portal (Neurodevelopmental CNV portal) established by Dennis Lal, Cleveland Clinic and the Broad Institute. We can provide a demo as well.
Please ask us about our Literature search or check here for relevant publications on 8p.
Grant Indirect Cost Policy
The key differentiating factor between “direct” and “indirect” costs is whether the cost is specifically required for the project or program to meet its objectives:
Direct costs are expenses directly incurred for the specific project or program being funded. Examples include salaries for program staff, travel expenses, materials, consultants required to execute the grant. Expenses like these would not be incurred if the project or program did not exist.
Indirect costs are overhead and administration expenses necessary to support an organization’s general operation, which are thus shared across projects or programs.
Examples include rent and utilities, office furniture, computers and information systems, and the costs of functions like development, finance and accounting, IT, HR, and legal. Expenses like these would be incurred in some amount with or without a specific project or program grant. Indirect costs are those for activities or services that benefit more than one project. Their precise benefits to a specific project are often difficult or impossible to trace.
Policy For Universities: Project 8p recognizes that grant award recipients may have overhead costs that are not directly attributable to the proposed project but are necessary to carry out the proposed project. Project 8p will not fund indirect costs, and therefore can only make grants to researchers and institutions that can absorb the indirect costs of the project. If an indirect cost estimate can be reasonably and transparently attributed to costs fairly associated with the program or project in question, we may make an exception and accept an indirect cost amount up to 6%. Grantees should discuss such an exception prior to submitting proposals.
While the definitions above provide general guidance, Project 8p reserves the right to review all costs and budget assumptions on a grant by grant basis.