IgM paraprotein associated polyneuropathy is a slowly progressive disease with numbness or tingling of arms and legs and severe imbalance. Occasionally, tremors and weakness are present. These symptoms are disabling, but difficult to measure. In addition, the disease is relatively rare, not very well-known, and there is no cure available. The IMAGiNe study aims to gather more knowledge about the disease by creating an international database of a large group of patients. From these patients we will learn more about the history of the disease, neurological and haematological disease characteristics, and the response to current or past treatments. The IMAGiNe study will also evaluate current outcome measures and develop new outcome measures, hereby focussing on patients’ needs. These outcome measures will represent the impairments, disabilities, quality of life and treatment expectations. The study has started in the Netherlands in 2016, and currently 90 patients are included. In 2017 the study will also be performed in the United Kingdom, Spain, Serbia, Italy, France, Switzerland, and the United States of America, aiming to include at least 400 patients worldwide. The knowledge gained from the IMAGiNe study will serve as a starting point for new therapeutic trials in the near future.
MHJ Pruppers