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
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.