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Useful resources for volunteers interested in the main trends in Parkinson’s research

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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 15 Dec 2020]

Parkinson’s UK

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

  • Get connected.  Join the Research Support Network and get hooked into PUK’s news feeds.

  • Main PUK research news blog. Hosted by medium.com

  • More PUK research news snippets

  • Find research studies in your area.  Simply type in your post code to find out who is recruiting in your area.

  • Q&A Forum: Discover the support our online community can offer for people living with or affected by Parkinson’s.

  • Latest (2019) trustees report and financial accounts. Useful background information about PUK’s research strategy.

Popular Blogs

Useful review articles in the scientific literature

If you want to go more deeply into the research driving the frontiers of Parkinson’s, you are going to have to invest time in getting to grips with the scientific literature. General review articles:

  • A broad overview of Parkinson’s disease, covering most of the important research areas active today. Full text.

  • Lancet review, abstract only.  But see useful summary figure showing possible progression of symptoms.

  • Incidence and prevalence of Parkinson’s in the UK. PUK report 2018. Full text.

  • Rating scales for Parkinson’s disease.  A number of rating scales, for example the Unified Parkinson’s Disease Rating Scale (UPDRS), are used in assessing disease severity. Web site.

Specific Areas

Clinical Trials

General:

  • The clinical trial process.  Web site.  This is a cancer site, but the general process applies also to PD.

  • Parkinson’s Disease Drug Therapies in the Clinical Trial Pipeline: 2020.  Excellent review by Kevin McFarthing et al.

  • 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. Web site.

  • Why clinical trial outcomes fail to translate into benefits for patients. Full text.

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

Exercise is important for people with Parkinson’s disease because it helps maintain balance, mobility, and the ability to perform daily routines.

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 and 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 of 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 websites

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.

Full test

If you are having problems getting hold of a paywall, either try emailing  the author or go to unpaywall.org.

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

Research Champions

Would you like to know more information about  becoming a Research Champion?