Waldenstrom’s Macroglobulinemia Patient Profile Project (WMPP)

Background: At the April 1999 Annual Meeting of the International Waldenstrom’s Macroglobulinemia Foundation (IWMF) in San Mateo, CA, there was substantial discussion about the lack of a central source of information about WM, the medical history of WM patients, the results of various treatments, etc. We knew that much information was being shared by patients on the IWMF Talklist, and available in physician’s patient files, but the Talklist information was not consolidated in any specific format for review and due to the rarity of the disease, any given physician may have records on only a few WM patients.

 

If you are a patient with Waldenstromÿs Macroglobulinemia and have not filled out the WMPP Questionnaire, we urge you to do so and join 700 other patients in shaping data that can help our researchers develop better treatments, and ultimately, find a cure. To participate, just download and print out the WMPP Questionnaire, fill it out and mail to the address at the bottom of the form. Download WMPP.

CLICK FOR QUESTIONNAIRE Print out.  Fill out.  Mail in.

 

A WM Patient Profile Committee (WMPP) was appointed to study the feasibility of collecting such data from the 2000 known patients listed with the IWMF, and with preparing a database that could be statistically analyzed and published for the interest of WM patients. In addition, the database would then be made available to medical researchers as a body of raw data to be considered as they subsequently structured scientific studies of WM.

After preparation and review of multiple drafts of the form by the WMPP Committee, medical personnel and other interested parties, the WMPP profile form was mailed to the members of the IWMF on February 2000. Over 700 responses have been received and the data has been entered into the WMPP Database, using Microsoft Access 2000.

Database Composition: The WMPP Input is structured as listed below:

1. Identification Data 2. Family Medical History 3. Patient Medical History 4. Patient Occupational, Geographical, Environmental and Lifestyle History 5. Diagnosis Information

6. Treatment History 7. Laboratory Test Data 8. Ongoing Treatment for Other Illnesses, Vitamin Routine, Alternative Medicine, Exercise Program 9. Present Status of Health 10. Remarks

Edition-1 of the Database contains 22 MS Access Tables with an estimated 150 to 200 data elements per patient. Approximately 400 of the 700 WM patients who submitted profiles have waived confidentiality thereby permitting interested researchers to contact them directly. This is an on going project and as additional profiles are received, additional data provided or updated, etc., the Database will be updated accordingly.

Database Availability: Copies of the MS Access 2000 Database are available in ZIP, CD or Floppy Disc form to requestors approved by the Board of Trustees. Once approved, the party will be placed on a Distribution List and will periodically be sent an updated copy of the Database. There will be no charge for the initial Database or the updates.

Approval Process: Interested parties should request the Database in writing from the President of the IWMF. The intended use of the Database and nature of the research should be specified. Address requests to the IWMF Office, at 3932D Swift Road, Sarasota, FL 34231.

Disclaimer: This is not a scientific study, it is a collection of data that has been furnished by the WM patient, their caregiver, or their physician’s staff. Neither the IWMF, the IWMF Board of Trustees, the WMPP Committee, nor the patients or caregivers themselves assure the accuracy or validity of the information provided.

Use of the WMPP: Edition-2 was distributed to our Scientific Advisory Committee and other qualified researchers in January 2002.

Two active studies are in progress on Edition-1. Dr. Mary McMasters of the National Cancer Institute (NCI) has selected approximately one hundred patients from the Database whom she is approaching for additional information about their family members with related cancers.

The second study is underway at Dana Farber Cancer Institute (DFCI) in Boston under the direction of Dr. Constantine Mitsiades and will be a complete review of the data.

The WMPP Committee regularly posts statistical reports and responses to queries on the WMPP Website at http://geocities.com/WMPP_data/. Here are some examples of reports, prepared by member Bob Haliwell:

We can also generate Treatment Reports for different protocols. For example, here is a Sort to generate a Treatment Report for 2Cda, a nucleoside analogue (Cladrabine) showing the treatment and the consequent result in IgM and White Blood Count (WBC) (deftly rendered by Bob Haliwell). In the future, researchers will be able to refine this data to see, for example, if age, prior treatment, or other factors, would make a difference in the results. Ultimately, with enough data, physicians will be able to tailor treatment programs to individuals’ unique physiology and condition, for much greater efficiency.

Over time, we will generate Treatment Reports for other kinds of treatments and protocols. Remember, what gives this data validity is the number of responses. Again, we need your data.

 

The WMPP is an ongoing project. If you haven’t sent your profile, please do so. If you have only partial data, send what you have and send the rest later. You can get a profile form from Sara McKinnie at the IWMF office (e-mail info@iwmf.com). The form is also available for downloading on the IWMF and the WMPP Website.

The profile includes a provision for maintaining the confidentiality of your identity. The researchers would prefer that you waive confidentiality so you can be contacted for clarification or future study, but we will abide by your wishes. If you previously submitted your profile and did not waive confidentiality but would like to do so now, please let us know.

This is the ONLY such statistical project available anywhere in the world for our unique disease, and for the project to be useful, we need your participation. The more patients who provide data, the more accurate and useful the WMPP will be. We need your data.

If you have any questions about the WMPP project, or if you are a physician treating WM patients or a lymphoma medical researcher, please contact Jim Johannsen, Chair at Jim.Johannsen@Verizon.net.