The German IVF Register (D.I.R) is a well-established institution for quality assurance
in German reproductive medicine. According to the Board of the D.I.R the aim is to
continually improve data collection.
The article by Kadi et al. criticized some of the mechanisms used by the D.I.R for data collection and to represent
the results. But an objective portrayal of the situation should also include positive
aspects, something the authors unfortunately rather left out. Even if the article
was weak in this respect, the editor supported its publication and additionally asked
the Board of the D.I.R for a comment on the article which is published in this issue
of our journal. Controversial discussions can help improve a project and to come closer
to the truth.
The authors Kadi and Wiesing defined a number of requirements for and expectations
of the D. I. R. In some respects, the divide between the mission the Register has
set itself, the professional policy goals and the aims posited by the authors is blurred.
For example, the (Model) Guideline on the Implementation of Assisted Reproductive
Technologies, an amended guideline put forward by the German Medical Association in
2006 and quoted several times by the authors, includes a sentence on the goals of
data collection which was not quoted: “The collected data should be regularly evaluated
in such a way that it allows physicians to assess their own professional work on an
individual basis.” This is not about information for patients. And the revised version
of Chapter 5.4.1 (Documentation) of the (Model) Guideline on the Implementation of
Assisted Reproductive Technologies of 2014 included the identical phrasing [4]. Consequently the D.I.R completely meets the requirements of the German Medical
Associations.
The passion with which the authors submitted their arguments ignores how unusual the
initiative is that is being assessed on these pages. There are very few fields in
clinical medicine where data has been collected and collated by “service providers”
over such a long period of time, in such detail and so extensively.
The collection and provision of information for patients was not and is not the real
task of the D. I. R. For it to be able to fulfill this requirement would require arrangements
which, in other countries, are carried out by governmental or quasi-governmental agencies
at far greater expense. In England, for example, a fee of € 100–150 is charged per
treatment cycle for documentation, a sum which is usually paid by the couple receiving
treatment. Is this additional burden on patients useful? Are there no doubts concerning
the system used for data collection in England?
In Austria only data obtained from the “Fond” are published – that means, comparatively
speaking, data on couples whose costs are (partially) reimbursed by statutory health
insurance companies. Couples who have to pay for their treatment themselves or who
are privately insured do not appear in the statistics. Women who are older than 40
years of age are not recorded. No details are published on the children who are born.
For more on this, see the article by Prof. Kupka recently published in the journal
“Geburtshilfe und Frauenheilkunde” (GebFra) [5].
Thanks to the work of the D.I.R, Germany has been participating in the European data
collection (EIM, European IVF-Monitoring Consortium) for more than 10 years and its
results compare very favorably with those of more than 30 countries [6].
In this context, the statement that the D.I.R is “the only register which aims to
collect and publish data on the outcomes after IVF and related methods for all of
Germany” is inaccurate. Data collection by a state-commissioned agency (in this case,
the Medical Associations) as demanded by the authors already exists (https://www.qsrepromed.de/). The question arises whether this collection of data is better. It is very much
to be doubted.
I would like to thank the authors of the article, the authors of the Comment by the
Board of the D.I.R and also the reviewers. What all of them share is that they highlight
the importance of data collection for the “scientific community, the public, political
decision-makers and potential patients” in the field of human reproductive medicine.
I hope that by publishing these articles, the suggestions will prompt political decision-makers
to shoulder their responsibility and continually improve data collection and the publication
of evaluated data in this field.
