Table 4.

Outline of the different actors in registry-based research, how potential problems can be overcome, and what each actor stands to gain from registry-based research

Actor	Potential harm	How to address potential harm	Benefits
Study participant/patient*	Identification of study participants Loss of control on which projects personal data are used	Researchers must take all feasible precautions to protect the integrity of patients and to use datasets without personal identifiers Researchers must only conduct research approved by the Ethics committee	Benefits may be as follows: 1) through media interviews, it is possible to inform the public (and patients) of new insights into disease etiology and the natural course of a disease; 2) improved health care; 3) as opposed to intervention studies, registry-based research is usually based on existing data and therefore involves no patient interaction
Health care	When the public hear of research data, their demand for medical testing may increase and this might drain the resources of healthcare providers	Researchers may participate in national health care meetings and may inform health care personnel of recent research findings. Although this requirement will not alleviate the burden of informing those patients who ask questions, it will help other health care personnel to give correct information	Increased knowledge and optimized health care. Registry-based research can help minimize unnecessary investigations and treatment (for example, if researchers can show that a certain investigation does not reduce the risk of a disease, health care practitioners can save time and expenses by decreasing the amount of unnecessary investigation); if researchers can identify medications that decrease the risk of a particular disease, this can save time and expense
Principal investigator (PI), collaborators, and their departments	Time and effort to carry out a project If confidentiality is breached, the breach will have a huge impact on trust and further research for the institutes and the PI	That time and effort are needed to perform a project is a negligible disadvantage, in that researchers conduct projects because they feel they are meaningful and exciting, and because they are being paid to do research Ensure safe, updated and transparent systems for data storage and handling	Increased knowledge New ideas for future research Prestige for the principal investigator and other involved researchers More publications Ability to hire PhD students, postdoctoral students, and other staff that can help with routine tasks. So that researchers can focus on specific tasks that require higher-level skills

Note:

^*Also applies to controls matched to “patients” in registry-based research.