Finding effective treatments for Parkinson’s has been difficult. Part of the problem is recruiting patients in clinical trials. Allowing patients to participate in the design of the trial can go far in solving this problem.

The disease drastically affects quality of life, and a network that shares knowledge would be a boon for professionals and patients alike. There are several models of this type of collaboration. One is termed ParkinsonNet, founded in the Netherlands in 2004, and more recently the Parkinson’s Excellence Network in the UK. A third is Parkinson’s Movement, which is part of the Cure Parkinson’s Trust, which is a patient-based think tank in the US and UK. Recently, a partnership was formed between ParkinsonNet and the Van Andel Research Institute based in Grand Rapids, Michigan. Kaiser Permanente is testing the feasibility of ParkinsonNet in a setting in California. This is based on the Dutch model.

Key focus areas are better treatment, improved services, and getting patients more control of their disorder. The goal is a new era of patient-driven research in healthcare.

See Lancet Neurology, November 2015, page 1077-1078.

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