CRMO Foundation Patient Powered Registry
An essential goal of the foundation is to create an environment where families have a greater ability to understand and participate in CRMO research. A patient registry is a fundamental component of organizing the community and working together with researchers.
After exploring several registry options, the Coordination of Rare Diseases at Sanford (CoRDS), a division of Sanford Health, was chosen due to its dedication to rare disease research and the functionality of the platform. CoRDS supports and enables rare disease communities to build registries and can connect registrants with researchers. The goal is to assist scientists asking fundamental questions about the disease and enabling those in translational and clinical research areas with clinical trial development.
The global CRMO community is invited to sign up and participate. This will enable the foundation to gather critical information about the disease and its progression through a natural history study.
Registry Highlights
-The participant is assigned a Global Unique Identifier (GUID) that enables deidentification of the data when shared with approved researchers to protect patient’s privacy.
-The deidentified data will be shared with researchers with approval from the foundation and Sanford’s Institutional Review Board.
-The registry is on clinicaltrials.gov as an official natural history study and it follows the NIH guidelines and policies for patient registries.
-The participant owns his/her own personal data and can withdraw from the registry at any time.
-There is no cost to participate.
-The CRMO Foundation is building a disease specific natural history questionnaire that will be available to all participates.
-Survey results and research funded by the CRMO Foundation will be regularly shared with participants.
Follow the link below to register:
In the rare disease field please enter: CRMO/CNO Chronic Nonbacterial Osteomyelitis/Chronic Recurrent Multifocal Osteomyelitis
Also, in the field asking where you heard about CoRDS, enter: CRMO Foundation
If you have any issues filling out the form please contact CoRDS for assistance. They can be reached at cords@sanfordhealth.org or by calling 1-877-658-9192. There is a paper version available as well if you cannot complete the registration through the computer. The platform does not currently support mobile phone access.
When the disease specific questionnaire is available, the community will be contacted to participate.