Data Collection
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Data Collection EBMT Slide template Barcelona 7 February 2008
The European Group for Blood and Marrow Transplantation The European Group for Blood and Marrow Transplantation
Retrospective Studies
Template graph slide
• 1 or 2 Studies / 3 months equally divided over all sub committees. • 2-4 studies with Low patient numbers • 2-4 studies with High patient numbers •
Note: response in smaller studies is higher (85%) after identification of the patients
The European Group for Blood and Marrow Transplantation
Survey
Template graph slide
• Survey : ask centres for identification variables for rare or misclassified diseases (example Richters, Mastocytocis)
The European Group for Blood and Marrow Transplantation
Survey
Template graph slide
• List of patients from Promise to check the disease classification
The European Group for Blood and Marrow Transplantation
Data collection Template graph slide In Projects with LOW Patient numbers •
Rare diseases few patients
•
Forms are filled in by hand, takes +- 10 min. per patient. Usually 1-5 patients per centre
•
We use prefilled questionnaires based on the MedAB forms
•
Some additional questions (separate form)
•
Send out PDF files (or Word) to be completed
The European Group for Blood and Marrow Transplantation
Data collection Template graph slide In Projects with HIGH Patient numbers •
100’s of patients
•
Build advanced queries in Promise (sometimes we need 3 or 4 queries.)
•
Check queries (same patients? Same order?)
•
Download excel files, and merge them
•
Arrange the columns in chronological order
•
Build in the conditional formatting
The European Group for Blood and Marrow Transplantation
Data collection Template graph slide In Projects with HIGH Patient numbers
The European Group for Blood and Marrow Transplantation
Collecting data
Template graph slide
•
When centres reply, send a Thank You!
•
Update the reply lists (participation, data collected, data entry)
•
When centres do not reply, send reminders (max. 3 times)
The European Group for Blood and Marrow Transplantation
Entering Data
Template graph slide •
Make a clear Print out, of your collected data (For every study, a special print macro is build. Every collected excel file can be easily printed.)
•
Open the received excel file on your 2nd Monitor
The European Group for Blood and Marrow Transplantation
Data Quality
Template graph slide •
Collection of study data
•
Check if patient is still eligible (example: in Philadelphia Negative study, a lot of patients appeared to be bcr abl positive. For these patients Philadelphia Negative was changed into Philadelphia positive. They were no longer eligible for the study.)
•
Data entry of eligible patients
•
Correct misclassification ask additional information about sub classification
The European Group for Blood and Marrow Transplantation
Extra Data
Template graph slide •
Some answers you have collected cannot be entered in Promise. For these data you will have to build a separate database (SPSS file).
•
When there’s a lot of extra data, we’ll design a separate Promise Project. (iron toxicity study)
The European Group for Blood and Marrow Transplantation
The European Group for Blood and Marrow Transplantation The European Group for Blood and Marrow Transplantation
Retrospective Studies
Template graph slide
• 1 or 2 Studies / 3 months equally divided over all sub committees. • 2-4 studies with Low patient numbers • 2-4 studies with High patient numbers •
Note: response in smaller studies is higher (85%) after identification of the patients
The European Group for Blood and Marrow Transplantation
Survey
Template graph slide
• Survey : ask centres for identification variables for rare or misclassified diseases (example Richters, Mastocytocis)
The European Group for Blood and Marrow Transplantation
Survey
Template graph slide
• List of patients from Promise to check the disease classification
The European Group for Blood and Marrow Transplantation
Data collection Template graph slide In Projects with LOW Patient numbers •
Rare diseases few patients
•
Forms are filled in by hand, takes +- 10 min. per patient. Usually 1-5 patients per centre
•
We use prefilled questionnaires based on the MedAB forms
•
Some additional questions (separate form)
•
Send out PDF files (or Word) to be completed
The European Group for Blood and Marrow Transplantation
Data collection Template graph slide In Projects with HIGH Patient numbers •
100’s of patients
•
Build advanced queries in Promise (sometimes we need 3 or 4 queries.)
•
Check queries (same patients? Same order?)
•
Download excel files, and merge them
•
Arrange the columns in chronological order
•
Build in the conditional formatting
The European Group for Blood and Marrow Transplantation
Data collection Template graph slide In Projects with HIGH Patient numbers
The European Group for Blood and Marrow Transplantation
Collecting data
Template graph slide
•
When centres reply, send a Thank You!
•
Update the reply lists (participation, data collected, data entry)
•
When centres do not reply, send reminders (max. 3 times)
The European Group for Blood and Marrow Transplantation
Entering Data
Template graph slide •
Make a clear Print out, of your collected data (For every study, a special print macro is build. Every collected excel file can be easily printed.)
•
Open the received excel file on your 2nd Monitor
The European Group for Blood and Marrow Transplantation
Data Quality
Template graph slide •
Collection of study data
•
Check if patient is still eligible (example: in Philadelphia Negative study, a lot of patients appeared to be bcr abl positive. For these patients Philadelphia Negative was changed into Philadelphia positive. They were no longer eligible for the study.)
•
Data entry of eligible patients
•
Correct misclassification ask additional information about sub classification
The European Group for Blood and Marrow Transplantation
Extra Data
Template graph slide •
Some answers you have collected cannot be entered in Promise. For these data you will have to build a separate database (SPSS file).
•
When there’s a lot of extra data, we’ll design a separate Promise Project. (iron toxicity study)
The European Group for Blood and Marrow Transplantation
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