The manuscript, written by Kunihiro Nishimura, the vice president of ASrid, and Yukiko Nishimura, the president of ASrid, was published in the Gene Medicine MOOK No. 35.

This book was written for many people involved in mitochondrial and mitochondrial disease research, including clinicians, basic and clinical researchers, pharmaceutical researchers, researchers at pharmaceutical companies, genetic counselors, students, and graduate students.

Chapter 6: The Information Infrastructure Platform input by the Patients/ASrid (Kunihiro Nishimura and Yukiko Nishimura)

Abstract: In the case of rare and intractable diseases, there is a lack of information, researchers, and specialists, so it is important to connect various stakeholders. In terms of information, it is also important to utilize patient-reported outcomes (PROs), which allow patients to evaluate their own symptoms and course of the disease that are known only to them and their families, and which can be useful in their medical care and lives. J-RARE is already collaborating with the Mitochondrial Disease Research Group and will be introduced here.

Mitochondria and Disease", Genetic Medicine MOOK, Vol. 35: http://www.medicaldo.co.jp/gene/mook.no35.htm