Patients Need to Be Heard in Drug Research

Regarding “Patients Sue for Amgen Drug” (April 27):

The voice of the patient is a key missing ingredient in the development of new therapies. Most researchers and sponsors of clinical trials still relate to human research subjects much the same as they relate to laboratory animals, recently demonstrated by Amgen’s dismissive treatment of the GDNF trial participants.

Developing safer, more effective treatments and finding disease cures require that scientists, pharmaceutical companies and patients instead work as a team.

This partnership is a patient-centered approach that is especially relevant for Parkinson’s disease, which not only affects movement but also to varying degrees affects more problematic aspects of functioning in the autonomic nervous system and the cognitive-emotional areas of the brain.

Research participants have insights into effects of therapies that researchers rarely capture.

The criteria for collaboration of patients with clinical researchers and their industry sponsors are contained in the Parkinson Pipeline Project “Research Participant’s Bill of Rights,” which includes patient expectations for participating in clinical research and industry responsibilities to its trial participants.

Biomedical research promises tremendous benefits for individuals and society, and these need not come at the cost of trampling on the rights or sacrificing the well-being of human study participants.

Perry D. Cohen

Parkinson Pipeline Project

Washington