REGISTRY | NKH Crusaders

PATIENT
REGISTRY

NKH Crusaders

HOW DO I PARTICIPATE?

Click the link button below to complete the patient registry questionnaire on the CoRDS website.

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

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.

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.

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.

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

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

* 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.