MORGAM Manual

Data Transfer Format: Follow-up Data Form: 25 Version: 4 Date: 17.06.2002

© National Institute for Health and Welfare and the MORGAM Project investigators Last updated: 31 October 2007 For more information, please contact Kari Kuulasmaa (firstname.lastname@thl.fi)

The purpose of this transfer format is to provide an exact and common format for the MORGAM Participating Centres (MPCs) to transfer the follow-up data of the MORGAM cohorts to the MORGAM Data Centre (MDC). Data in the format specified here should be submitted to the MDC for every member of each MORGAM cohort. The members of the cohort are defined in section Definition and selection of cohorts. The data should be sent through e-mail, not on paper forms.

Contents

• Format specification
• General instructions
• Specific instructions for each item
• Updates

Format specification

General Instructions

The record format is ASCII fixed length and record size is 52 characters. The position of each data item in the record is given in column "COLUMNS" of this data transfer format. There should be one record of data for every member of each MORGAM cohort.

This format corresponds with the layout of the information on the electronic data file which is transferred, and need not correspond with the format of locally used paper forms or electronic files. Instructions for transferring the data are given in section Data communication between the Participating Centres and the MDC. To avoid errors, special attention should be paid in extracting these data items from the local data set.

The ITEM NAME on the document is a computer variable name used for the item by the MDC.

Blank fields are not allowed in the record.

Instructions for making corrections to data that have already been sent to the MDC are given in Section Data communication between the Participating Centres and the MDC.

Please contact the MDC for instructions if you cannot provide information as specified in this document or if you have any problems with the interpretation of the coding for any specific items.

Specific instructions for each item

Follow these instructions carefully when creating a computer file for the data transfer from the MPC to the MDC.

Number 25 indicates the "Data transfer format: follow-up data".

Enter the version number from the heading of the "Data transfer format: follow-up data" which you are using. If the version number of the data transfer format which you are using is not "4", these instructions do not correspond to the format you are using. Check that you are using the valid version of the format.

Items CENTRE...SERIAL

These are key items used for merging the different records of the same individual. Please make sure that the codes are identical with those used for the same person in the "Data transfer format: MONICA survey data".

Code 88 (irrelevant). The purpose of this item is to reserve fixed columns for the key items in all data transfer formats. This is a key item in the event data formats, but irrelevant for the other data transfer formats.

The first two columns are for the month; code 01 - 12, or code 99 if the month is not known. Enter the year of birth, in full four characters, in the last four columns. If the year of birth is not known, which should be very rare, derive the year of birth from an estimate of the age.

This item is the same as item MBIRTH of the "Data transfer format: MONICA survey data", and it will be used for double checking the key items. If you compile the data for this record from various sources, please extract the data for this item from a different source than for the MONICA survey record.

This item is the same as item SEX of the "Data transfer format: MONICA survey data", and it will be used for double checking the key items. If you compile the data for this record from various sources, please extract the data for this item from a different source than for the MONICA survey record.

Items EXDATE...EXREAS: Data on exit from the study

The individual's follow-up period ends at his exit from the study. The exit takes place when the earliest one of the following events occur:

• the person dies;
• the fixed follow-up period of the cohort for the study ends;
• the person refuses from taking part in the study;
• the person is lost to follow-up, i.e. it is no longer possible to follow-up the person for his or her death with reasonable efforts.

The number of subjects lost to follow-up should be kept as small as possible. If the MPC wants to apply any other exit criteria, such as an upper age limit for the follow-up, these should first be agreed with the MDC.

See also instructions for item EXREAS below, and the section "Follow-up process".

Enter the date of the individual's exit from the study (see the common instructions for items EXDATE...EXREAS above). The first two columns are for the day; code 01 -31 for specific dates. The next two columns are for the month; code 01 - 12. The last four columns are for the year.

If the exact date is not known, use circumstantial evidence to estimate the most likely date. If the person died or was lost to follow-up, and there is no circumstantial evidence, estimate the date of exit as half-way between the day when the person was last known to be alive and the day when the death or loss to follow-up was observed.

If the reason for the exit is the person's refusal to take part in the study, then the date of exit is the date until which there is a permission. If the person has indicated that he or she does not want to take part at all in the follow-up, then code EXDATE the same as DEXAM (Date of examination) in the MONICA Survey Data.

Enter the reason for the exit from the study (see the common instructions for items EXDATE...EXREAS above).

Code 3 if the subject moved to such a place that he or she cannot be followed up for death.

Code 2 rather than 3 or 5 if it is likely that the MORGAM team would have become aware of a death had it occurred.

Code 5 for example if the follow-up was carried out up to specific age only and the person reaches that age.

Items DEATHDU...UCDSOUR: Underlying cause of death

Enter here the ICD code of the underlying cause of death. Whenever possible, it should be the final official cause of death. If this is not available it should be derived from the latest available source, such as the death certificate.

Where the MPC has a copy of the death certificate, either without the ICD codes coded according to national coding practices, or the ICD codes are present, but national coding routines cannot be followed to find what the underlying cause of death would be, then contact the MDC.

Use the three-character ICD-8, ICD-9 or ICD-10 codes, and identify the used ICD-version in item ICDVERD below.

Note: Insufficient data is exceptionally coded NNN because 999 is a relevant ICD-8 and ICD-9 code.

Code 1 if the data for item DEATHDU was extracted from final official mortality statistics.
Code 2 if the source of the data for item DEATHDU was the death certificate.
Code 8 if DEATHDU = 888 or NNN.
Code 9 if the source of the data is not known. (This code should only be used in exceptional circumstances.)

Items DEATHDA...ICDVERD: Death certificate or final death diagnoses

If all death diagnoses are available they should be recorded to the subsequent items DEATHDA ..., DEATHDO. The items follow the order of the international form of medical certification recommended by Word Health Assembly (see e.g. Medical certification and rules for classification in Manual of the International Classification of Diseases, Injuries, and causes of  Death, World Health Organization, Geneva, 1977 or Rules and guidelines for mortality and morbidity coding in International Statistical Classification of Diseases and Related Health Problems, Tenth Revision, Volume 2, World Health Organization, Geneva, 1993 ). DEATHDA, DEATHDB and DEATHDC correspond to what is stated on lines (a), (b) and (c) respectively in Part I of  the form of death certificate. DEATHDO corresponds to Part II of the form. Same order can be followed even if diagnoses are derived from the final official death register. Whenever possible, the final official codes should be used. The codes will usually include the underlying cause of death. In some cases it may be different from what was recorded in item DEATHDU, as the source of the diagnosis can be different. For example, DEATHDU may be the final official code, but DEATHDA-DEATHDC may only be available from the the death certificate.

If the disease or condition directly leading to death, describes completely the train of events,  and only that diagnosis was written to the death certificate the code of the diagnosis should be recorded in the item DEATHDA.

If the MPC cannot follow the order recommended here then contact the MDC.

Use the three-character ICD-8, ICD-9 or ICD-10 codes, and identify the used ICD-version in item ICDVERD below. For an ICD-8 or ICD-9 code starting with a letter, such as E or Y, you should enter the letter and the first two numbers of the code (e.g. for ICD-9 code E987, enter E98).

Note: Insufficient data are exceptionally coded NNN because 999 is a relevant ICD-8 and ICD-9 code.

Enter here the ICD code of the disease or condition directly leading to death, i.e. the ICD code of the disease or condition reported on line (a) of Part I on death certificate. If there is only one step in the chain of events enter the ICD code of the diagnosis here.
Code NNN if diagnoses of death are not available.

Enter here the ICD code of the intervening antecedent cause if death i.e. the ICD code reported on line (b) of Part I on death certificate.
Code NNN if there is no intervening antecedent cause of death i.e. no  ICD code reported on line (b) of Part I on death certificate or if diagnoses of death are not available.

Enter here the ICD code of the underlying cause of death i.e. the ICD code reported on line (c) of Part I on death certificate.
Code NNN if there is only one step in the chain of events and reported in DEATHDA or if diagnoses of death are not available.

Enter here the first ICD code of the diagnoses of other conditions contributing to death but not related to the disease or condition causing it i.e. the first ICD code reported in Part II on death certificate. If there is an ICD code relating to a MORGAM end-point, which was not coded in DEATHDA-DEATHDC, it should be coded here.
Code NNN if there are no causes of death other than those recorded in DEATHDA, DEATHDB or DEATHDC or if diagnoses of death are not available.

Enter here the source of the diagnoses which was used for coding items DEATHDA ... DEATHDO.

Code 1 if causes of death were extracted from final official mortality statistics.
Code 2 if source of causes of death was the death certificate.
Code 8 if DEATHDA, DEATHDB, DEATHDC, DEATHDO = 888 or NNN.
Code 9 if the source of the data is not known. (This code should only be used in exceptional circumstances.)

Enter the code for the the ICD version which was used for coding items DEATHDU ... DEATHDO.

If the person died during the follow-up, indicate here whether or not a necropsy was performed.

Code 1 if a routine or medico-legal necropsy was performed.
Code 2 if no necropsy was performed.
Code 8 if EXREAS = 2, 3, 4, 5 or 6.
Code 9 if it is not known whether or not necropsy was performed.

Updates