The active participation of participants in the research process implies the responsibility of the researchers and their respective teams to ensure that all potential participants are adequately contacted and informed about the study protocol and the conditions involved in the possible participation.
During the initial contact with the participant, particular attention should be given to the following actions:
- Appropriately contact the participant, indicating that:
- their contact information has been obtained via the participant registry of the QPN of which they are a member.
- their neurologist has been contacted regarding this specific study and has given consent for this participant to be contacted.
- the participant is free to agree to participate or not in this specific study.
- Provide contact information where the participant can reach the research team for more information about the study for which they have been contacted.
- Inform the participant if they are excluded from the study and provide the necessary explanations.
Subsequent experience in engaging registry participants in research has shown that good conduct with participants, particularly at the initial contact stage, generates results that better meet the needs of researchers and the expectations of participants.