Metode og Data nr. 86 - DDA Samfund - Dansk Data Arkiv

English Summary
By ULLA ANDERSEN, DDA
The main theme of this issue of Metode &
Data is medical research/medical research
data. By choosing this theme we hope to
contribute to drawing attention to the necessity
of establishing a professional data archive
for the medical research sector in the future at
a time when ERAS – Enheden for registrering
og arkivering af sundhedsvidenskabelige data
(The unit of registration and storage of
medical research data) is at the expiration of
its project period.
The first article contains a presentation of
ERAS and the future of the archiving of
medical research data in Denmark. The article
is addressed to readers who already know
ERAS as well as to new readers.
It is a well-known fact that the methods and
techniques used within social science and
medical research are very much the same as
regards collection and analysis of data on
individuals (micro data). The two articles
„Registrenes sundhedsvidenskabelige potentiale“
(The Medical Research Potential of
the Registers) and „Data og metadata af høj
kvalitet“ (Data and Metadata of High Quality)
by Thorkild I.A. Sørensen and Jens M.
Lauritsen, respectively, are both written by
researchers within medical research; however,
the articles are relevant for everyone who
takes an interest in collection and/or analysis
of empirical research data.
Thorkild I.A. Sørensen’s article presents
the possibilities for medical research which
are contained in the many – comprehensive –
side 51 Metode & Data nr. 86 – 2002
registers with information on the total Danish
population as well as in the questionnaire
surveys which contain detailed information
about a statistically selected sample of the
population. In addition, Mr. Sørensen puts
forward a number of ethical considerations
and discusses the risks of abuse of information
by researchers who are granted access to the
data.
Research based on registers is often
specifically associated with medical research,
but the registers are, of course, also of interest
for the social sciences, just as some of the
social science research data in the DDA’s
holdings also can be used in medical research
projects.
The article by Jens M. Lauritsen introduces
the program EpiData, which has been
designed for the collection of data for
research. The article describes the challenges
researchers meet when creating data and
documentation of high quality, in general
and in particular within medical research.
The last article in this issue is a slightly
revised version of a report from the committee
concerning the storage of medical research
data. The report contains suggestions to the
organization of a future permanent unit of
registration and archival storage of medical
research data.
Finally, the usual section Studies processed
to class D this time contains medical research
studies which will be available to researchers
and students – now and in the future.