CML Permanent Code - CML Medication Status
Chronic myeloid leukemia
Français / Español
WARNING
The use of the CML Permanent Code and the CML Medication Status is entirely under the responsibility of the user with regard to data confidentiality.
When these codes are used in discussion groups (Facebook or others), there is an invasion of privacy, especially if these codes follow the true name of the user. Use as much as possible in private groups with precaution. These codes are mostly used in surveys where all people's names are not used and are therefore anonymous.
WARNING
The use of the CML Permanent Code and the CML Medication Status is entirely under the responsibility of the user with regard to data confidentiality.
When these codes are used in discussion groups (Facebook or others), there is an invasion of privacy, especially if these codes follow the true name of the user. Use as much as possible in private groups with precaution. These codes are mostly used in surveys where all people's names are not used and are therefore anonymous.
Some very simple questions to ask yourself, especially if you have changed medications often:
How long have you been on imatinib?
How long have you been on dasatinib?
How long have you been on nilotinib?
How long did it take you to reach the TFR stage?
How long have you had CML?
At what age were you diagnosed with CML?
Do you keep your medical data on paper or computer support? In the event of loss of your data, do you have to ensure the confidentiality of your data?
When you participate in surveys or in the exchange of information with a third party (healthcare professional or others), are your data sufficiently complete (error-free)?
How long have you been on imatinib?
How long have you been on dasatinib?
How long have you been on nilotinib?
How long did it take you to reach the TFR stage?
How long have you had CML?
At what age were you diagnosed with CML?
Do you keep your medical data on paper or computer support? In the event of loss of your data, do you have to ensure the confidentiality of your data?
When you participate in surveys or in the exchange of information with a third party (healthcare professional or others), are your data sufficiently complete (error-free)?
GOALS:
1 - Allow to classify in a CML folder (C:\Users\...\Documents\medical\CML), the permanent data of the patient (date of birth and date of diagnosis). These will be put in the code 'CML Permanent Code'. Allow the patient's medication status to be classified on a given date in a 'CML Medication Status' code. If there are multiple medications changes with a given date, there will be multiple 'CML Medication Status' codes.
2 - As these data can be used for surveys, the composition of these two codes must not reveal the identity of the patient. To ensure maximum confidentiality, the CML Permanent Code' will not contain names, civic addresses, email addresses and full date of birth (only the year and the month but not the day).
3 - These codes must not contain errors because they can be used for various surveys and various calculation processes. These two codes must therefore go through a validation procedure. Results will be displayed on the screen and also in files downloaded to the patient's computer as desired.
4 - The use of these codes is temporary and will be replaced as needed by patient associations when the artificial intelligence project is implemented. These codes are used only by patients with CML and are not standardized by any government agency.
1 - Allow to classify in a CML folder (C:\Users\...\Documents\medical\CML), the permanent data of the patient (date of birth and date of diagnosis). These will be put in the code 'CML Permanent Code'. Allow the patient's medication status to be classified on a given date in a 'CML Medication Status' code. If there are multiple medications changes with a given date, there will be multiple 'CML Medication Status' codes.
2 - As these data can be used for surveys, the composition of these two codes must not reveal the identity of the patient. To ensure maximum confidentiality, the CML Permanent Code' will not contain names, civic addresses, email addresses and full date of birth (only the year and the month but not the day).
3 - These codes must not contain errors because they can be used for various surveys and various calculation processes. These two codes must therefore go through a validation procedure. Results will be displayed on the screen and also in files downloaded to the patient's computer as desired.
4 - The use of these codes is temporary and will be replaced as needed by patient associations when the artificial intelligence project is implemented. These codes are used only by patients with CML and are not standardized by any government agency.
A patient have only one 'CML Permanent Code' but many 'CML Medication Status'.
For example, the patient can have only one 'CML Permanent Code'
(ex.: CA5311030515592)
and also 4 'CML Medication Status' :
0-1000000000-400-20030615 at June 15, 2003
0-1200000000-070-20150112 at January 12, 2015
1-1250000000-000-20200114 at January 14, 2020
0-1256000000-080-20210221 at February 21, 2021
Note: Each time the patient changes his medication or the dose of his medication or his TFR status is changed (Treatment free remission), the patient must create another CML Medication Status.
It is very important to validate these two codes in the following sections because if there are errors, they will be rejected in subsequent operations.
For example, the patient can have only one 'CML Permanent Code'
(ex.: CA5311030515592)
and also 4 'CML Medication Status' :
0-1000000000-400-20030615 at June 15, 2003
0-1200000000-070-20150112 at January 12, 2015
1-1250000000-000-20200114 at January 14, 2020
0-1256000000-080-20210221 at February 21, 2021
Note: Each time the patient changes his medication or the dose of his medication or his TFR status is changed (Treatment free remission), the patient must create another CML Medication Status.
It is very important to validate these two codes in the following sections because if there are errors, they will be rejected in subsequent operations.
CML Permanent Code - CML Medication Status
CA5311030615592 - 1-1250000000-400-20210215
CA 5311 0306 1 5592 - 1 1250000000 400 20210215
CA5311030615592 - 1-1250000000-400-20210215
CA 5311 0306 1 5592 - 1 1250000000 400 20210215
CML Permanent Code
CA5311030615592 ==> CA 5311 0306 1 5592
CA5311030615592 ==> CA 5311 0306 1 5592
|
CA 5311 FFFF 0306 1 5592 |
CA for Canada How to find the country code Date of birth (YYMM) 1953 11 (November) For more confidentiality, the day is omitted from the date. The month and the year are kept. Date of diagnostic (YYMM) 2003 06 (June) Gender ( 1 for man or 2 for woman) Personal number ( Calculus with your birthdate number) 19531124 ==> 1953*11*24 = 515592 ==> 5592 (For more confidentiality, keep the last four digits of the result) |
After the creation of your CML Permanent code, a CMLer's code will be given to you for further utilisation. This code should not be confused with your Personal Number.
CML Medication Status
1-1250000000-400-20210215 ==> 1 1250000000 400 20210215
TFR modifications Dose Date of the last of medications modification
1-1250000000-400-20210215 ==> 1 1250000000 400 20210215
TFR modifications Dose Date of the last of medications modification
Treatment Free Remission
0-1250000000-400-20210215
0 for Not in TFR 0 for Not in TFR
1 for In TFR
0-1250000000-400-20210215
0 for Not in TFR 0 for Not in TFR
1 for In TFR
Medication history - Possibility of 10 modifications.
A modification can be a change in TFR status or a change in medication or a change in the dose..
0-1250000000-400-20210215
History
A modification can be a change in TFR status or a change in medication or a change in the dose..
0-1250000000-400-20210215
History
|
0 - none 1 – imatinib 2- dasatinib 3- nilotinib 4- ponatinib 5 – bosutinib 6 – asciminib 7 – interferon 8 - radotinib 9 – other |
0-1000000000-400-20040215 Med change |
Vertical Divider
If one medication (For example: imatinib only ==> 1000000000
If three medications (For example: imatinib, dasatinib and bosutinib) ==> 1250000000
Note: This patient start with imatinib (1) and after dasatinib (2),....
If five medications (For example: interferon+imatinib+dasatinib+nilotinib+bosutinib => 7123500000
Note: This patient start with interferon and after with imatinib,...
If three medications (For example: imatinib, dasatinib and bosutinib) ==> 1250000000
Note: This patient start with imatinib (1) and after dasatinib (2),....
If five medications (For example: interferon+imatinib+dasatinib+nilotinib+bosutinib => 7123500000
Note: This patient start with interferon and after with imatinib,...
Daily dose of the last medication you took:
A new daily dose triggers a new recording of the CML Medication Status. You must enter the dose of the last medication. The other doses of the first medications are already listed in the previous CML Medication Status records.
In this CML Medication Status record, the last medication is bosutinib (5) and the daily dose is 400 mg.
1-1250000000-400-20210215
|
0 - 0 mg ==> 000
1 - 20 mg ==> 020 2 - 40 mg ==> 040 3 - 50 mg ==> 050 4 - 60 mg ==> 060 . 5 - 70 mg ==> 070 6 - 80 mg ==> 080 7 - 100 mg ==> 100 |
8 - 140 mg ==> 140
9 - 200 mg ==> 200 10 - 300 mg ==> 300 11 - 400 mg ==> 400 12 - 500 mg ==> 500 13 - 600 mg ==> 600 14 - 800 mg ==> 800 15 - Other ==> 999 |
Date of the modification
1-1250000000-400-21200215
20210215 ==> YYYYMMDD ==> 15 February 2021
1-1250000000-400-21200215
20210215 ==> YYYYMMDD ==> 15 February 2021
Validation of the CML Permanent Code
|
Validation of the CML Medication Status
|
