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Upcoming Research Opportunity: The NKH SCOPE CM Project

  • 12 hours ago
  • 2 min read


NKH Crusaders, with support from The Jack Richard Urban Foundation and the Nora Jane Foundation, are excited to share a new research initiative: the SCOPE Project.



Our community is committed to advancing research that leads to better treatments and, ultimately, a cure for Nonketotic Hyperglycinemia (NKH). A new research initiative, the SCOPE CM Project, is in development and may offer families the opportunity to contribute to meaningful scientific progress from home.


What is The NKH SCOPE CM Project?

SCOPE (Systemic Changes Observed through Peripheral Expression) is a research project designed to capture a molecular snapshot of how the body is functioning using a small blood sample.


The goal of the NKH SCOPE CM Project is to better understand how NKH—and commonly used treatments like sodium benzoate—impact the body beyond what we currently see clinically.


What Participation May Involve

If eligible, participation is expected to include:

  • A short online survey (approximately 15 questions) covering demographics, medications, and lifestyle

  • At-home blood collection using a mailed kit (no clinic visit required)

  • Participation from:

    • One individual with NKH

    • One biological parent (used as a comparison/control)

Important Details

  • The study is expected to run for approximately 2 years

  • The survey and blood collection are completed one time per participant

  • All samples and data will be de-identified to protect privacy

  • Individual results will not be returned

  • Findings will be shared with the NKH community as a whole


Where Things Stand Now

Full study details—including eligibility criteria, consent forms, and final procedures—will be shared after formal approval from an Institutional Review Board (IRB), which ensures the study meets ethical and safety standards.

No final details are set until that process is complete.


Why This Matters

Research like SCOPE helps move beyond surface-level understanding of NKH and into deeper, system-wide insights that could shape future treatments, care strategies, and outcomes.

Participation from families plays a critical role in making this kind of progress possible.


Stay Connected

If you are interested in learning more as this opportunity develops, we encourage you to stay connected with NKH Crusaders. Updates will be shared as soon as more information becomes available. If you would like to be first to hear those updates, please fill out this form.

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