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.
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 CoRDS to launch this vital registry.
How to Participate
Click the 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.
Your privacy is of top importance! This registry is de-identified, which means that only anonymous data will be shared with approved researchers.
Have Questions?
Fill out the form — NKH Crusaders is here to support you and help clarify anything you're uncertain about as we build the registry together.