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Chronic Myeloid Leukemia

 

          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. 
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 niloitinib?  
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. 
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.: CA5311050615592)  and also 4  'CML Medication Status' :

0-1000000000-20030615     at June 15, 2003
0-1200000000-20150112     at January 12, 2015
1-1250000000-20200114     at January 14, 2020           
1-1256000000-20210221     at February 21, 2021
​

Note: Each time the patient changes his medication or the  (Treatment free remission) TFR status is changed, 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
CA5311050615592                 -        1-1250000000-20210215               
CA  5311  0506  1  5592         -        1  1250000000  20210215
Try to validate these two codes with the procedures Validation below
CML Permanent Code
CA5311050615592   ==>   CA  5311  0506  1  5592
CA

5311

FFFF

​
​0506

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)  2005 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) 
​
Create your CML Permanent Code
CML Medication Status 
 
1-1250000000-20210215  ==> 1   1250000000        20210215  
                                       TFR    modifications  Date of the last modification                                                     of medications 
​

Note:
 Each time the patient changes his medication or the  (Treatment free remission) TFR status is changed, the patient must create another CML Medication Status.​
Treatment Free Remission

1 – 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.
      
0 -  none
1 – imatinib
2-  dasatinib
3-  nilotinib
4-  ponatinib
5 – bosutinib
6 – asciminib
7 – interferon
​8 - radotinib
9 – other
 
                                     

0-1000000000-20040215  Med change
0-1200000000-20060215   Med change
0-1250000000-20080415   Med change
​1-1250000000-20100215    TFR change
0-1250000000-20100615   TFR change
1-1256000000-20150215    Med change
etc


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 and after dasatinib,....

If five medications  (For example: interferon+imatinib+dasatinib+nilotinib+bosutinib => 7123500000
​Note: This patient start with interferon and after with imatinib,...
Date of the modification
1-1256000000-21200215     
20210215    ==>   YYYYMMDD   ==>   15 February 2021
Create your CML Validation Status
Validation of the CML Permanent Code
Validation of the CML Permanent Code
<<<
Mandatory
Validation of the CML Medication Status
Validation of the CML Medication Status
<<<
Mandatory
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