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Table 2 Overview of data collection timepoints during follow-up

From: A French multicentric prospective prognostic cohort with epidemiological, clinical, biological and treatment information to improve knowledge on lymphoma patients: study protocol of the “REal world dAta in LYmphoma and survival in adults” (REALYSA) cohort

Collected data

Data source

M6

M12

M18

M24

M30

M36

Y4

Y5

Y6

Y7

Y8

Y9

Disease status at last hematology consultation

Patient medical record

x

x

x

x

x

x

x

x

x

x

x

x

Number of consultations and imaging exams

Patient medical record

x

x

x

x

x

x

x

x

x

x

x

x

Treatment linesa

Patient medical record

x

x

x

x

x

x

x

x

x

x

x

x

Response to treatment

Patient medical record

x

x

x

x

x

x

x

x

x

x

x

x

Adverse events

Patient medical record

x

x

x

x

x

x

x

x

x

x

x

x

Relapses/progressions/transformationsb

Patient medical record

x

x

x

x

x

x

x

x

x

x

x

x

New malignancy

Patient medical record

x

x

x

x

x

x

x

x

x

x

x

x

New morbidities

Auto-questionnaire

x

 

x

 

x

 

x

x

x

x

x

x

Lifestyle

Auto-questionnaire

x

 

x

   

x

 

x

 

x

 

Professional situation

Auto-questionnaire

 

x

 

x

   

x

 

x

 

x

Work stress

Auto-questionnaire (Siegrist questionnaire)

 

x

 

x

   

x

 

x

 

x

Quality of life

Auto-questionnaire (QLQ-C30 + lymphoma specific modules)

 

x

 

x

 

x

  

x

  

x

Social support

Auto-questionnaire (SSQ6)

x

x

 

x

 

x

x

x

x

x

x

x

Women sexual and reproductive health

Auto-questionnaire

    

x

       

Health behaviorsc

Auto-questionnaire

     

x

  

x

  

x

Date and cause of death

Patient medical record

 

End of study: reasons for early termination

Patient medical record

 
  1. adetailed therapies, start/end dates, dose modality (full/reduced in chemotherapy), amount of Gray if radiotherapy, transplant and other surgeries
  2. bdates, involvement, available documentation, method of evaluation used, staging
  3. cincluding use of alternative medicine, screening behaviors