Resources

Here is a list of useful resources for volunteers interested in expanding their knowledge of the main trends in Parkinson’s research.  [Last updated 12 June 2019.]

Parkinson’s UK:

It is worth spending some time getting to grips with Parkinson’s UK’s web site.  Lots of useful info, but can be difficult to navigate. Some selected short cuts:

Useful review articles in the scientific literature:

[Not all of these links lead to full text]

Clinical trials – general:

Therapies in development. Overview by Kevin McFarthing.

Clinical trials highlights, Journal of Parkinson’s Disease.

http://ClinicalTrials.gov is a registry of clinical trials. It is run by the United States National Library of Medicine (NLM) at the National Institutes of Health, and is the largest clinical trials database, currently holding registrations from over 230,000 trials from 195 countries in the world.

Find research studies in your area.

Clinical trials – specific

The GDNF trial – the facts

This was a complex trial of 41 people living with Parkinson’s which tested a pioneering Convection Enhanced Delivery system to deliver the drug with pin-point precision into the brain, but also tested whether GDNF showed any potential benefit as a disease modifying treatment for Parkinson’s.

GDNF – the on-going controversy

Filmed by the BBC over six years, 42 people with Parkinson’s take part in a groundbreaking medical trial. Can the results give hope to 10 million Parkinson’s sufferers worldwide?

Exercise:

Parkinson’s exercise framework

Physiotherapy for treatment of Parkinson’s disease, Cochrane reports summarize evidence and provide a powerful tool to enhance healthcare knowledge and informed decision making.

Local resources:

The Barker lab, based at the John van Geest Centre for Brain Repair, Addenbrookes site, Cambridge is a major center for research on Parkinson’s disease.

Cambridge clinical trials unit’s (CCTU) “Patient Led
Research Hub” supports patient-led research, working in partnership with patient groups to deliver clinical studies based on their own research questions.

Videos, talks, presentations:

The Gretchen Amphlett Lecture 2019.  The archived lecture can be found on You Tube:   This year’s  lectures featured Professor Roger Barker and Dr Beckie Port and provided insight on the landmarks in Parkinson’s research over the last 10 years.  Barker’s talk provides a rare overview on where the cutting edges  of PD research lie.  It is quite detailed but well worth the effort of getting to grips with the key themes.

Other useful Web sites:

Parkinson’s Research Interest Group  on FaceBook, aims to increase awareness of and participation in PD research by highlighting progress and opportunities to participate.

The Science of Parkinson’s.  Plain English information from Simon Stott, Cure Parkinson’s Trust, about the research being conducted on Parkinson’s.

Parkinson’s News Today.  A regular digest of Parkinson’s research news from around the world

Michael J Fox Foundation

The Perky Parky.   Young onset PD sufferer.  Writes humorous blog about life with PD.

Research archives:

Europe Pubmed Central.  Want to read the latest research? Europe PMC is a repository, providing free access to worldwide life sciences articles, books, patents and clinical guidelines.

Uniprot.  Want to know all there is to know about alpha synuclein?  The mission of UniProt is to provide the scientific community with a comprehensive, high-quality and freely accessible resource of protein sequence and functional information.

In preparation:

  • Primer on how to search public databases of research and clinical information,, such as PubMed, Europe PubMed, ClinicalTrials.gov, etc.
  • What to look out for when assessing research claims.
  • Library of recent review articles about PD.
  • PD primer and jargon buster
  • Latest PUK research funding strategy updates