The Amyloidosis Patient Registry is a new resource for the entire amyloidosis community from Amyloidosis Support Groups. By compiling data on patient experiences with amyloidosis, the Registry will become the go-to resource for medical researchers and caregivers in their pursuit of earlier diagnosis, better treatment, and improved quality of life for those affected by this debilitating disease.
Your participation is the key to the Registry's success. By adding your data to those of other amyloidosis patients we expand the power of the Registry to make a difference for all of us. It is easy to participate and costs nothing but your time. After you register, you will fill out a series of surveys about amyloidosis and how it affects you and your family. The surveys don't have to be done in one visit. You can return to the surveys as often as you like to answer the questions.
Any information you share is private, secure, and completely controlled by you. Your data remains anonymous to researchers accessing the Registry unless you specifically allow them access to identifiable information like your name or contact information. If your anonymized data qualifies you for participation in a clinical trial, the Registry will notify you and ask for permission to release your contact information directly to the trial researchers.
Please register using a computer rather than a mobile phone or tablet. Some users have reported registration problems when using mobile phones and tablets. Visit our Helpful Hints page for more information about registering.
Click on REGISTER NOW to get started with your own account or to sign in if you are a returning user.
Please note: the Amyloidosis Patient Registry will launch in a new window through our partner, Private Access, to ensure the privacy and security of your data.