Research Opportunities

Data sharing is essential for expedited translation of research results into knowledge, products, and procedures to improve human health.

— National Institute of Health

Phenotypic Data and Biospecimens

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

Biorepository and Cell lines

We have a diverse collection of PBMCs, plasma, DNA and RNA, fibroblasts, and ipsc’s available upon request.

Genotypes represented in the Project 8p biobank

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Insights Portal

De-identified data is available for approved researchers and clinicians in a single encrypted and secure portal.

  • Researchers will be able to log-in to explore, curate data, and to execute their research individually and collaboratively. The ability to do cohort analysis for a subset based on phenotypes or genotypes will be available.
  • Data is being collected through multiple approaches patient reported surveys, validated and standardized surveys, EMR records, clinician reported data, and researcher reported data including raw data such as RNAseq and other data sets. 
  • 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.

Chromosome 8p Registry and Biorepository Requests

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

 

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 Project 8p Foundation (Project 8p) was created in 2018 to:

  • Accelerate future treatments, not only for 8p, but potentially for other chromosome-wide diseases as well.
  • Lead with knowledge from patients. Currently, there is no cure for 8p disorders, nor is there a standard course of treatment.

The Project 8p Foundation (Project 8p) was created in 2018 to:

  • Raise transformative funding for pioneering scientific research into treatments for a complex, rare disease involving 250+ affected genes on the short arm of the 8 th chromosome (8p). Rearrangements of these genes causes significant abnormalities to the entire neurological system, thus all organs and functions of the body– with variance in cognitive functions, gross motor skills, social development and other challenges during infancy, and throughout life;
  • Empower a unified community of 8p patients and their families so they can have meaningful lives today; and
  • Accelerate future treatments, not only for 8p, but potentially for other chromosome-wide diseases as well.