Chromosome 8p Registry & Biorepository

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

— National Institute of Health

Together Towards Treatment

Annual 2022 Update or Registry 2.0. As this study is to better understand the disease over time, it requires improvements, updates to the protocol, and reconsenting. This is intentional to be certain that you understand participation on an ongoing basis and review your information to ensure it is correct and not out of date.

RETURNING REGISTRY USER

Existing Users – Returning for Access

NEW USER

1st Time New Users

Chromosome 8p Registry:

A Global Retrospective and Prospective Study of Affected Individuals with Chromosome 8p Rearrangements, NB200051, Project 8p IRB Protocol (04-12-2022), Version 5.0

Principal Investigator:

Bina Shah, MBAProject 8p Foundation600 Third Avenue, Floor 42New York, NY 10016-1924

For Technical Support with logging in and other issues, please email Matrix at

matrixsupport@acrossmatrix.com

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.