gms | German Medical Science

Introduction: The German Wismut study is with about 63,000 individuals one of the largest cohort studies of miners exposed to radon [1], [2]. Vital status and cause of death have been tracked every five years since 1998. This contribution contrasts the paper-based with the new electronic vital status data collection.

Methods: The first step of follow-up in the Wismut study is to determine the vital status and the place and date of death. For the first five follow-ups (1998-2018, every five years), vital status was collected using a paper-based process:

1.

letter mailed to registration offices with a form to obtain information from the population register for each requested person,

2.

mainly manual processing at registration offices,

3.

postal return of the completed forms,

4.

digitalization of register information.

If people have moved, one or more further rounds of enquiry are required. The current sixth follow-up is the first to use electronic register information to collect vital status:

1.

submission of initial data via an online portal to the service provider,

2.

electronic population register enquiries, including relocation chain enquiries,

3.

delivery of population register information via an online portal,

4.

validation of death information and cause of death research with data of local health authorities.

Results: In the fifth follow-up (until end of 2018), paper-based data collection contacted around 3,100 registration offices for information about 28,638 individuals, 10.6% needed additional inquiries, 85% of information was paper-based and death record number was provided for 71% of the deceased individuals. The electronic data collection at the sixth follow-up (until end of 2023) took only two weeks for 97.5% of 23,992 individuals, much shorter than the previous 14 months for 94.6% of the individuals using the paper-based method. The costs to the data requestor remain roughly the same for both approaches. However, the electronic process saves resources: human resources in the requesting institution, in the registration offices and for data digitalization as well as material resources for paper, printing and postage. Additionally, the validity of the data is higher, as errors associated with manual transfers and digitalization of forms are minimized. A disadvantage of the electronic register information is that it does not include death record numbers.

Discussion: The electronic process was found to be attractive and practical due to its high success rate, short duration, resource savings and high data availability. For the vast majority of deceased, the cause of death can be determined without the death record number. The extent to which the lack of death record numbers hampers the determination of causes of death will have to be assessed once the data collection is complete. The paper-based approach to obtaining information from the population register is widely used in studies of uranium miners, but some American studies apply a record linkage approach with higher loss to follow-up [3].

Conclusion: Using electronic vital records information greatly streamlines the process of determining a cohort's vital status.

The authors declare that they have no competing interests.

The authors declare that an ethics committee vote is not required.