The Patient Database (PDB) is an Internet-secure record of the medical history of Waldenstrom’s macroglobulinemia (WM) patients. Although parts of the PDB are still being developed, several units are now available for patients to enter their data. WM patients have voluntarily registered to participate in the PDB by entering a comprehensive history of their health, diseases, test results, treatments, and symptoms. Data from individual histories are combined to provide invaluable information about the nature and effects of WM that is not available anywhere else, including medical institutions and government agencies.
The PDB was created by members of the IWMF, some of whom are doctors, scientists, and computer technology specialists who volunteered their time to develop a comprehensive series of on-line questions and multiple choice answers on all aspects of WM. Those questions and answers are intended to provide more diverse information about WM than is currently available to doctors who treat WM patients. The PDB was designed to be able to answer many questions about WM, including the medical status of patients at diagnosis, the effects and outcomes of treatments, and the signs and symptoms of this rare lymphoma.
Another key purpose of this PDB will involve an intensive statistical analysis of all the data to look for relationships and unique findings that can be applied to guide research and treatments to increase the quality of life and longevity of WM patients everywhere. At this time, there is not a single treatment that has been developed for WM because it is an orphan disease with too few patients to justify the cost of drug development. Therefore, the response and side effects of drugs that are used for treatments developed for other lymphomas need to be cataloged and evaluated for WM patients. And the PDB may, therefore, be a most effective method to accumulate and present the outcomes of those drugs used to treat WM.
HOW IS DATA COLLECTED?
The data collected in the PDB is put there by participating WM patients who use the Internet. All of the questions in the PDB are understandable so that even a newly diagnosed patient can participate. Many of the terms are defined in a glossary that is linked to questions and answers to provide a clear definition of the terms. (These definitions are also an excellent way to learn more about WM). The questions and answers are presented in four major units that cover Patient History, Test Results, Treatments and Drugs, and Signs and Symptoms.
The PDB is an on-going, living history that tracks WM patient health. It is not a static, one-time entry of data. Patients are encouraged and reminded to enter all of their periodic test results and any treatments, side effects and symptoms whenever they occur. The PDB, therefore, tracks the condition of each patient by the information entered by the patient for as long as he or she has WM.
A special feature of the PDB is the personal table of test results that is available for each participant. This table shows the date, test type, and result of each measurement in chronological order so that the patient can study the table to review the changes that have occurred over time. Such a table can be most helpful in deciding how these test results correspond to symptoms and treatment outcomes. The personal test result table is viewable online only by the participating patient; it can also be printed to share with doctors and specialists as needed.
HOW CAN YOU PARTICIPATE?
The most useful and potentially valuable answers that come from the PDB depend on patient participation. The applicability of these answers from the PDB directly depends on the number of patients who participate. The more patients who participate, the higher the quality and reliability of the data that can be extracted from the PDB.
All WM patients are welcomed and encouraged to participate in the PDB. All it requires is a willingness to take the time to answer the questions that are presented. The identity of each PDB participant is kept confidential so that no patient can be identified or linked to his or her data.
You will need some records, especially test results, in order to provide a complete personal medical history. The PDB provides instructions on how to get any records you may not currently have in your possession. As more units come available for patients to use, periodic announcements will be made to alert participants that these units are ready for data entry.
To register for the PDB, simply click on the following link and complete the registration form.
If you have questions about the PDB send an email to: