The GBS|CIDP Foundation invites you to join the online Patient Registry for patients with GBS|CIDP or variants of the condition. The GBS|CIDP Patient Registry, consisting of patient reported standardized questionnaires, will allow healthcare professionals access to critical, de-identified patient data and a more in-depth understanding of the patient experience. This unique collection of data can be critical for the pursuit of medical advancements and development of patient resources. Studies of these conditions may take years to finish, but patient reported registries provide power in numbers! The Foundation will provide periodic updates and results with the discoveries made possible with this impactful data.
If you are a patient, or the primary caretaker of a patient living with GBS, CIDP or a variant of the condition, we encourage you share your experience, enroll in GBS|CIDP patient registry and play a role in a better tomorrow for GBS|CIDP patients everywhere.
What is a Patient Registry?
A patient registry is an online data system that systematically collects, stores, and retrieves patient data for analysis in research studies. The GBS|CIDP Patient Registry serves to:
What types of data will be collected in the GBS | CIDP Patient Registry? Is the data secure?
The GBS|CIDP Registry collects data on the following topics:
The GBS|CIDP Registry follows strict government guidelines to assure patient information is protected. The registry platform is served over HTTPS, providing encryption of traffic to prevent eavesdropping and man-in-the-middle attacks. Communication between the registry platform application server and the database are also encrypted.
For more information: https://www.gbs-cidp.org/research/faq-patient-registry-study/
For questions: Registry@gbs-cidp.org