A new study is seeking to understand how the ongoing coronavirus/COVID-19 pandemic is impacting patients with a rare blood cancer called Waldenström’s macroglobulinemia (WM). The research is to be conducted using the WhiMSICAL registry, which is a global registry database of patients that are living with this rare disease. Some rare disease patient communities are at a heightened risk for contracting COVID-19, so it is important that research like this is conducted in order to continue to identify communities that are at high risk.
About Waldenström’s Macroglobulinemia
Waldenström’s macroglobulinemia, which is also known as lymphoplasmacytic lymphoma, is a rare type of blood cancer that affects two types of B lymphocytes, including plasma cells and lymphoplasmacytoid cells. A distinct characteristic of this type of cancer is the presence of a high concentration of IgM antibodies. It is a slow progressing form of blood cancer, and many patients can lead active lives. While it cannot be cured, it is treatable; some patients are able to experience years of remission without symptoms. There are only about 1,500 new cases per year in the U.S. Although it mostly occurs due to sporadic genetic mutations, a family history increases risk. Symptoms include vision loss, headaches, enlargement of the lymph nodes, liver, and spleen, bleeding nose and gums, weight loss, fatigue, and general weakness. To learn more about WM, click here.
WM and COVID-19
The ability to join the registry is available to WM patients anywhere around the world. The process involves the completion of a series of questions that was recently updated to include questions directly related to COVID-19. For patients that have already registered, remember that you can update your answers at any time in case your circumstances change. This is also true for patients who test positive for COVID-19 in the future.
If you are interested in being a part of the WhiMSICAL registry, please click here to begin the sign up process. The data from this registry is an essential resource for WM research related to COVID-19 and beyond.