The Chromosome 8p Registry is an IRB approved study:
A Global Retrospective and Prospective Study of Affected Individuals with Chromosome 8p Rearrangements
Principal Investigator:
Bina Shah, MBA
Project 8p Foundation
To learn more about the My Hero Initiative, click here
We have a diverse collection of PBMCs, plasma, DNA and RNA, fibroblasts, and ipsc’s available upon request.
De-identified data is available for approved researchers and clinicians in a single encrypted and secure portal.
We believe in Team Science and the ability to easily provide resources for approved investigators
The following step represent the process to review and approve investigators interested to ensure studies benefit people with chromosome 8p disorders or related disorders.
1. Contact the priniciple investigator Bina Shah via email at bina@project8p.org to request the complete set of instructions and procedures.
2. We will have a discussion with you about the research concept and review the resources and procedures.
3. The investigator develops and submits a title, abstract, research proposal (below). In the future, we will have an electronic form for you to submit.
4. Investigators will submit their IRB approval or exemption document.
5. Investigators will execute a Data Use Agreement with the Project 8p Foundation.
6. Project 8p Foundation’s Review Committee will approve the proposal based on the review criteria. Including but not limited to scientific merit, data protection and privacy, and capacity to complete the proposed studies. Based on the Committee’s decision, there may also be an opportunity for the investigator to revise their initial proposal with feedback.
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.
There may be costs associated with distributing specimens from the biorepository to interested researchers– any fees will be determined on an individual basis. Any revenue generated from these samples will be utilized to fund the objectives associated with the Chromosome 8p Registry and Biorepository.
Registry data and samples from the biorepository will be available to any interested researcher approved and may be available for commercial use.
We believe in Team Science and the ability to easily provide resources for approved investigators
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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 purpose and research concept and review the resources and procedures
The investigator develops and submits a title, abstract, research proposal
Investigators will submit their IRB approval or exemption document
Investigators will execute a Data Use Agreement  that describes your role of engagement and adherence to the rules monitored by and with the Project 8p Foundation.
Project 8p Foundation’s Review Committee will approve the proposal based on the review criteria. Including but not limited to scientific merit, quality of the investigative team, data protection and privacy, and capacity to complete the proposed studies. Based on the Committee’s decision, there may also be an opportunity for the investigator to revise their initial proposal with feedback
The Office of Human Research Protections (OHRP) Education and Outreach(link is external)
The NLM: Bioethics Information Resources
Project 8p Foundation is a registered 501(c)(3) charitable organization with EIN 83-2545342. All contributions are deemed tax-deductible
