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Japanese ALS patients and families eager to shape research, survey finds
A study reported by Phys.org finds that people living with ALS in Japan and their families are willing to help shape research on the disease. Most of them, however, have never heard of patient and public involvement (PPI).
What the study found
According to a study published in October, people living with amyotrophic lateral sclerosis (ALS) in Japan and their families are keen to take part in shaping research on the disease. The reporting outlet Phys.org attributes these findings to the study.
The same study indicates that most respondents have never encountered the term patient and public involvement, the approach through which patients and the public contribute to research.
Open questions
- How many people took part in the study?
- Which concrete research projects could draw on this input?