Good practices

Good practices for using the participant’s registry

The involvement of the participants in research process implies that researchers and their teams should ensure that potential participants are adequately contacted and informed regarding the study protocol as well as the conditions of an agreed participation.

During the initial contact, particular attention should be paid to the following actions:

  • Contact the participant appropriately and mention that :
    • i) Her/His coordinates were obtained from the participants’ registry in which she/he is member.
    • ii) Her/His neurologist was informed about the current study and gave his/her agreement to contact the participant.
    • iii) The participant is free to take part in this study or refuse to do so.
  • Provide contact information for the participant in order to join the research team to learn more about the study for which he was contacted.
  • Inform the participant if she/he will be excluded from the study and provide the necessary explanations.

Previous learning about the participant’s commitment to the registry have shown that good practices towards participants, particularly since the initial contact, implied better research results with respect to researchers needs as well as participants expectations.