Background Realizing patient partnership in research requires a shift from patient
participation in ancillary roles to engagement as contributing members of research teams …

The United States has long made substantial investments in clinical research with the goal
of improving the health and well-being of our nation. There is no doubt that these …

As public involvement in the design, conduct and dissemination of health research has
become an expected norm and firmly enshrined in policy, interest in measuring its impact …

Despite calls for increased community engagement in autism research, the published
evidence base suggests that participatory autism research remains rare. This study …

Current knowledge about mechanisms and interventions for pain has largely been derived
from samples that are healthier, wealthier, younger, and more likely to be White than the …

Despite more autism research taking place than ever before, there is a disconnect between
the current landscape of autism research and what autistic people and their allies want from …

Scientists are increasingly crossing the boundaries of the professional system by involving
the general public (the crowd) directly in their research. However, this crowd involvement …

Rare genetic diseases collectively impact millions of individuals in the United States. These
patients and their families share many challenges including delayed diagnosis, lack of …

Background There is growing interest in patient and stakeholder engagement in research,
yet limited evidence about effective methods. Since 2012, the Patient-Centered Outcomes …

Introduction: Autistic advocates and their supporters have long argued that conventional
research practices provide too few opportunities for genuine engagement with autistic …