Welcome to the CLL (chronic lymphocytic leukemia) Database. CLL is the most common type of adult leukemia; little is known about its causes, how it will progress, when it should be treated, and how successful treatment will be. When the newly diagnosed ask their doctors what to expect, the honest, thoughtful answer is "It’s incurable. We don’t know how it will develop for you; everyone is different."

A group of patients brought together in 2001 by posting messages on the CLL Digest (http://listserv.acor.org/archives/cll.html) decided that the uncertainty of this disease demanded a new approach. If histories of large numbers of patients with the more common forms of cancer could be useful, why wouldn’t they be for CLL? The ACOR CLL List has 2000 participants, most of whom track their white and red blood cell count lab reports, so that they know how their disease is progressing. They share reports on the web. Why not develop a database on the web that would record such data on a continuous basis, and produce reports about its results?

A pilot project of willing guinea pigs was followed by the introduction of a web site (patientdatabases.org) with an increasing number of contributors. Next came a non profit organization, Patient Databases (PDB), incorporated in the District of Columbia in 2002. The IRS granted tax-exempt status (501 (c) (3) in June 2002 and the District of Columbia in August 2002.

The founding members of the Board of Directors provided a detailed description of PDB goals and how they would be achieved in the IRS application for tax exempt status. They embody the original concept of matching personal data about patients with their periodic blood count reports and, eventually, with other diagnostic tools. The type and timing of treatment are also recorded.

Goals and Activities

Patient Databases supports the continuous tracking of a large number of patients who have been diagnosed with chronic lymphocytic leukemia (CLL) to contribute to medical research about its diagnosis, prognosis, and treatment. No such tracking takes place at the present time. The CLL PDB is a product of patient initiative and leadership. Its immediate goals are to:

include the highest possible percentage of CLL patients in the Database as expeditiously as possible

add continuously to database records of patient white and red blood cell counts, with the help and advice of medical and research specialists at the National Cancer Institute of the National Institutes of Health and other national and international medical centers

match changes in the blood counts over time with significant personal data such as the date of diagnosis, age of the patient, and intervals of time between initial and subsequent treatments

provide analyses of the data to help support conclusions about the age, gender, geographical distribution of the disease, and morbidity; the relevance of doubling time of the lymphocyte count with prognosis; the effectiveness of various types of treatment

to add at some future time additional data within the database about patient diagnostic and prognostic CLL tools such as other blood cell counts, flow cytometry measurements, bone marrow biopsies, DNA results, and detailed data about the various types of treatment and their relevance to patient characteristics described above.

Reports on patient-supplied data will be supervised by members of the Board of Directors working with the members of an Advisory Committee of medical specialists, electronic database experts, public policy makers, and patients. This group will periodically evaluate the current activities of the Database and make recommendations for future activities.

The Officers and Board of Directors of Patient Databases are:

Ken Cogger, PhD, President, Conifer, CO
Karen Goodell, Treasurer, Lawrence, KS
Diane T. MacKinnon, Chevy Chase, MD
Carol Lucas, Beaufort, SC
Marianne McGhan, Soap Lake, WA
David Thomas, Calgary, Alberta, Canada
Marcia Weller Weinhold, Ph.D., Hammond, IN

According to the By Laws, Board Members include patients and others who have an interest in finding a cure for CLL. They may number between 5 and 13.

Members of the Advisory Committee: Gerald Marti, M.D. Ph.D., CLL Program, National Cancer Institute, Bethesda, MD; Susan J. Leclair, Ph.D., Department of Medical Laboratory Science, University of Massachusetts Dartmouth; and Dr. Terry Hamblin, Professor of Haematology at the University of Southampton, England, and recipient of the 2003 Binet-Rai medal for outstanding research in CLL.  We will be adding more details on these outstanding individuals

Members of the Board of Directors have mobilized support for improving the care of CLL patients in a number of ways. They have promoted the use of the ACOR web site; lobbied Congress for research funds; written and lectured widely to patient groups; mobilized community support groups.

The By Laws of Patient Databases (PDB) provide that the principal office of the PDB will be in the District of Columbia, although the Board may create offices elsewhere. The Board has exclusive control of the funds and affairs of the organization. The Treasurer reports annually on finances and other matters; these reports will be available upon request.

Comments on any aspect of the organization or the database are welcome. Inquiries and comments should be directed to:

Ken Cogger, PhD, President: cogger@peakconsulting.com [32154 Christopher Lane, Conifer, CO 80433, (303) 570-3792]

Karen Goodell, who will also welcome contributions payable to Patientdatabases, Inc.: kmg@sunflower.com [2925 Yellowstone Drive, Lawrence, KS 66047, (785) 842-9906]

CLL Listserve and Archives
http://listserv.acor.org/archives/cll.html
We recommend a CLL Digest subscription. Check its archives.

CLL Topics Information Site:
http://www.clltopics.org/
Excellent source materials all related to CLL.

CLL Frequently Asked Questions
http://cllfaq.acor.org/
For CLL FAQs, Glossary and Acronyms.

Leukemia and Lymphoma Society
http://www.leukemia-lymphoma.org
The Society offers information and services to patients with blood-related cancers, including CLL.

Health Talk
http://www.healthtalk.com
Information and resources including live and archived webcasts with CLL specialists.  They host the CLL Education Network.