Host: The Japanese Society of Toxicology
Name : The 47th Annual Meeting of the Japanese Society of Toxicology
Date : 2020 -
The NANBYO patient groups (PGs) in Japan are often composed of patients and families. Compared to US/EU PGs, Japanese PGs focus almost exclusively on the social welfare area and don't have strong connections with outside experts. On the other hand, Rare disease research and orphan drug development (R&D) will be increasingly required input from patients. However, the relationship between researchers and patients is not yet mature in Japan.
ASrid is an intermediate organization targeting the rare/intractable disease area. Therefore, ASrid has regularly exchanged and collaborated with various multi-stakeholders, e.g. patients and families, medical agencies, universities, industries (including clinical / non-clinical researchers) and government. ASrid is actively involved in international cooperation and participates in many global activities, including UN-certified NGOs and others. Based on these collaboration achievements, we have implemented activities with multi-stakeholders in the PPI (Patient Public Involvement) initiative.
Leveraging the “not stakeholder” position in this area, ASrid exists as a professional of PRO (Patient Reported Outcome) utilization w/a all relevant parties. For example, we conducted a survey about the patients’ impressions of a clinical research/trial (FY2018) and the opinion survey on orphan drug R&D from people involved in corporate R&Ds (FY2016). We will introduce some actual cases and introduce expectations for clinical and non-clinical researchers and future issues/challenges including input from rare disease/ NANBYO patients/families.
