CLL Patient Database
Tracking Data for Research and Treatment
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Patient Databases (PDB) collects data about chronic lymphocytic leukemia (CLL) for use by patients, medical practitioners and researchers, and public and private sector decision makers. The ultimate goal is a cure for CLL. An interim goal is to help patients learn more about their disease by keeping and entering diagnostic data in the CLL PDB and by comparing their own data with a large number of other patients. A second goal is to provide medical researchers and practitioners with data useful in their search for effective treatment.
Public health officials and others entrusted with decisions about CLL with regard to research and the availability of treatment will benefit from the CLL PDB.
Those who use the web interactively, that is to buy books, airplane tickets, or take out a subscription to a newspaper or magazine, know that it is possible to do this through exchanges of information between the product supplier and the user. The supplier uses a software which makes it possible to develop relational databases. The CLL PDB, like any interactive database, uses such software. Currently there are two parts, or tables, one with data about the individual user, and one with data about his/her blood counts consecutively over time which can be matched with or related to each other to develop reports or respond to queries about the relationship.
Personal data, protected by an ID and a password supplied by the patient registrant, includes the following about each: first name, middle initial, last name; address, city, state, zip or postal code, and country; demographic data including date of birth and CLL diagnosis, sex, race, and highest level of education. The collection of this data not only permits its comparison with the second part or table, the blood data, but since geographical and demographic data are reported by the US census a way of comparing the CLL PDB registrants with the general US population.
Blood data collected include: the dates of the laboratory report and absolute (as opposed to percentages) counts of the white blood cells, red blood cells, hemoglobin, platelets, and lymphocytes; percentages of hematocrit and lymphocyte levels, and the serum beta-2 microglobulin level. The latter is not always available but reporting was requested by the Advisory Committee.
Treatment information includes the date of its and type under several headings: alkylating agent, purine analog, monoclonal antibody, radiation, steroids, allogenic, mini-allogenic, or autologous transplant, and leukapheresis.
Additional information or comments may be entered at any time.
All members of the Board of Directors of Patient Databases are committed to maintaining the privacy of all the data and information submitted by patient participants. The web site is protected with Secure Socket Layer (SSL) encryption. All information transmitted to and from the site is subjected to high grade (RC4 128 bit) encryption.
Protection of Data: The two present sources of data in CLL Patient Databases include personal data submitted by participants when they register. At this point they select an ID (imurph, eg), a password, and an additional piece of information unique to them. When participants enter their laboratory report results they are required to identify themselves by their ID and password. Queries and reports may match personal data with lab report results, eg we may report on levels of lymphocytes from blood counts by the age, gender, geographical location, etc. of the total number of participants.
Limits on Access: Access to individual registration and blood count data is limited to registrants by password. It is otherwise limited to one or two members of the Board of Directors who are responsible for the overall management of the Database and to one or two technical administrators of the Database. The latter will be selected by the Board managers after consultation with the Advisory Committee and others.
Use of Data: Responses to queries and the development of CLL PDB reports will be made exclusively by the technical administrators after consultation with the Board of Directors managers. The data will never be made available, as an entity, to any person, group, or corporation.
Our database management software provides for the recording of additional diagnostic, prognostic, or treatment data as separate tables in the relational database. The results of other diagnostic tools, such as flow cytometry or DNA tests, bone marrow biopsies, among others, can be recorded in separate tables similar to the initial blood count table and matched with the secure personal registration data.
Data about treatment can be made more specific with respect to type and dose. Comments can also be more specific so that the occurrence of other chronic disease diagnoses may be recorded. A table or entry can also be added to include objective levels such as infections, fevers, and subjective such as fatigue.
PDB’s primary goal is to spread knowledge about CLL and other blood diseases as widely as possible. Because of the need for patient privacy direct access to information in the CLL PDB will be limited to administrators who have been approved by the Board. They will be required to sign the Privacy Agreement and will be under the direct supervision of a PDB Officer.
The Advisory Committee will help to anticipate the need for reports from the CLL PDB. The Advisory Committee has already suggested preparing periodic reports on age at diagnosis and other personal factors such as gender, geographic location; the period of time between diagnosis and first treatment, among others. Queries will be welcome from physicians, medical researchers, patients, and other interested parties. Reports and responses to queries will be posted on the PDB web site.
The data in the CLL PDB can help to reduce uncertainty about the prognosis of the disease. It will help to determine average age of men and women at diagnosis, the interval of time between diagnosis and first treatment, particularly as related to changes in the CBC (complete count of red and white blood cells) in that period. Data can help to determine prognosis in terms of demographic factors.
A specialist will assemble and respond to questions under the guidance of the Advisory Committee. Periodic reports can be developed from the queries and in respond to recommendations from other sources.
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