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Table 4 Status of patient involvement in each research process

From: The practice of active patient involvement in rare disease research using ICT: experiences and lessons from the RUDY JAPAN project

Research process Status of patient involvement
Conceptualization Partially: Patients were not involved in the initial conceptualization. From 2017, one of the patient authors (BY) became more centrally involved with the project and worked to strengthen the concept.
Governance Partially: In the initial phase, patients were not involved in the decision making. Nevertheless, we quickly established the Steering Committee and, thereafter, patients were involved in many activities including decision making and feedback.
System development Partially: The initial software was developed in the UK and adopted to Japan by the researchers. Subsequently, the Steering Committee gave considerable feedback to improve it.
Choice of target diseases and questionnaires Partially: Patients with channelopathies were not involved in the decisions on the target disease and questionnaires. HAE was added as a target disease based on the connection with and involvement of patients, the patient organization and researchers.
Questionnaire development Highly: An HAE questionnaire (attack record) was developed in collaboration with patients.
Recruitment Partially: Patient partners were involved in recruiting patient group members and suggested effective recruitment strategies.
Control of individual data use Highly: RUDY JAPAN employs dynamic consent which allows participants to tailor and manage their own data sharing preferences.
Analysis and interpretation of the data collected through the questionnaires on the system Not yet, but we are exploring how to conduct analysis with patients.
Communication including dissemination of the progress and results of the research Highly: We developed a variety of communication strategies with patient partners including the Patient Network Forum, the website and newsletters.