Participate in Patient Registries
Patient registries provide researchers with the opportunity to analyze the data that is generated and collected over a patient’s lifetime. The true analytical value of such registries can only be achieved when large numbers of participants provide access to their data.
The IWMF evaluates requests for participants among the WM patient/caregiver population to ensure that the registry is viable, and that proper security and privacy precautions are taken.
We encourage everyone to participate in as many registries as possible – it only takes a few moments of your time, and the larger the number of people that participate, the stronger the conclusions that can be gained from analyzing the data. And, of course, the closer we can get to a cure!
Below are the registries that are currently actively recruiting participants. Follow the links for each one to register and participate:
- WhiMSICAL: worldwide in scope; patients enter their medical data and respond to survey questions. (see also: https://www.cart-wheel.org/page/21/waldenstroms-macroglobulinemia)
- LLS Patient Registry: for US patients only; with patient approval, the LLS downloads electronic patient medical data from medical provider portals
- Rory Morrison WMUK Registry Project: for UK patients only; medical data is submitted by physicians, and quality of life data is entered by patients