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NKH CRUSADERS
PATIENT REGISTERY

HOW DO I PARTICIPATE?

You participate by completing a questionnaire.

This can be done at this secure Sanford CoRDS link:

      - OR - 
You can simply call CoRDS at 1-877-658-9192 and they will enter data on your behalf.

WHAT IS IT?

The NKH Patient Registry is a centralized effort to get real-world data to those who can make a difference: researchers and pharmaceutical companies.

WHO MADE IT HAPPEN?

NKH Crusaders partnered with Sanford’s CoRD (Coordination of Rare Diseases) - a nonprofit research institution - to establish this essential registry. NKH Crusaders is the longest-standing organizaTion dedicated to NKH research and advocacy. Founded in 2010, they have raised over half a million dollars for NKH research to date.

WHY IS IT IMPORTANT?

A strong and thorough NKH registry is a crucial motivator for researchers and pharmaceutical companies to move forward with new therapies, treatments, and trials.

Early data from NKH gene therapy in mice shows that treatment may be effective in a wide range of ages.

THE VALUE OF A CENTRALIZED AND ROBUST PATIENT REGISTRY CANNOT BE OVERSTATED

* Complete your enrollment and survey by December 15, 2022 to be entered into a drawing to win one of ten $50 Amazon gift cards. Drawing to be held on December 16, 2022.

Your privacy is of top importance! This registry is de-identified, which means that only anonymous data will be shared with approved researchers.