Scientific Concept of the National Cohort (status ... - Nationale Kohorte

A.7
Table 7.2 Availability of identification numbers
A.7 Ethical aspects
Table 7.2: Availability of identification numbers
ID-P Personal
Identifying
Data
Link
between
ID-P and
ID-S
200
ID-S
and
study
data
ID for
secondary
data –
central
data
request
ID for
secondary
data –
local data
request
Trust
center � � � X � X X
Study center:
Subject
management
Study center:
Examination
unit
ID-A
L L L X X L X
TL TL TL L X X X
Integration
center X X X � X X �
Competence
center X X X S � X X
Source of
secondary data X � X X � � X
Transfer
unit X X X � X X �
�= available; X = not available; L = only for local participants; TL = temporary, only for local;
participants; S = only specific data
A.7.2.4 data access
Access to scientific data
General aspects
The National Cohort e.V. would like to encourage research using resources collected as
part of the National Cohort. Data collected as part of the National Cohort are for scientific
use only and should benefit high-quality research. To this end, data access must be fair,
transparent, and open. As there may be a high demand for data access on various projects,
careful management of the resources and coordination of such research projects are important,
especially as some resources are finite (e.g., biological samples).
The National Cohort e.V. will be the legal owner of all data and biological samples provided
by the participants and will retain overall control of all access to the data and samples. An
access policy will be developed, in which the application process, the criteria for prioritization,
the handling of conflicts of interest, and the composition of the “Use and Access Committee”
will be described. Different request procedures may coexist, depending on the data
required (questionnaire data vs. biological samples).
Approval
Third parties cannot contact participants directly; they can only apply for access to data and
material via the National Cohort.