There are also some handy links in the world of Parkinson's research:
Charter for Clinical Trials
Charter for Clinical Trials in Parkinson’s from the Cure Parkinson’s Trust – setting standards of practice for those involved in clinical trials for Parkinson’s for potential Parkinson’s study participants and clinicians/researchers.
The Chronic Sorrow Concept
The needs of carers and the concept of 'chronic sorrow' - a link to a research paper from addressing the issue of “chronic sorrow”.
Parkinson’s disease can cause many emotions, including grief and a sense of isolation for both the person with PD and their partner. Such ongoing grief and emotional turmoil can be termed chronic sorrow. The aim of this research is to present accounts of partners’ perspectives, analysed in the context of chronic sorrow theory, to offer health professionals an insight into the impact of non-motor PD symptoms on partners.