For Clinicians/Researchers

Process for accessing the Chromosome 8p Registry information is highlighted below. Investigators can request data or biospecimens here.

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.

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.