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EU funded project: NRT

EU-funded projects: Neurological Regeneration Trial

Seventh Framework Programme (FP7)

Website: www.nrtfp7.com

What is NRT?

The Neurological Regeneration Trial (NRT) project is an EU-funded, European phase II clinical trial to demonstrate that rhPDGF-BB (recombinant human platelet derived growth factor-BB) can act as a novel restorative therapy for people with Parkinson’s.

The therapy builds on compelling data from animal studies and the results of a phase I clinical trial, which have shown that rhPDGF-BB is safe and well tolerated, and that the surgical procedure is without unacceptable side effects to humans.

Parkinson’s Cafés

Three Parkinson’s Cafés took place in 2013 and 2014 as part of the EU-funded Neurological Regeneration Trial (NRT) project. The aim of the cafés was to help people with Parkinson’s (PwPs) find out more about clinical trials and the realities of participating.

The first café was held in the city of Oxford in the UK in July 2013; the second followed in Lund University, Sweden, in November. The third was held Bremen in Germany in April. All three events attracted healthcare professionals and a diverse group of PwPs and their carers. Each meeting provided information about clinical trials and new surgical procedures for PwPs.

Presentations by leading authorities in Parkinson’s disease and patients who have taken part in clinical trials were the focus of the three meetings. Attendees learned about clinical trials, how new drugs are developed, and about new developments in the pipeline for Parkinson’s disease treatments. Attendees were also given opportunities ask questions during interactive question and answer sessions.


The EPDA and NRT

The EPDA’s role throughout the NRT project is one of representing the patient voice. We will ensure that the needs of the people with Parkinson’s are at the heart of all the decisions made.

One of the EPDA ’s main tasks throughout the project is dissemination – in other words, we will ensure that the NRT project is well communicated to Parkinson’s organisations across Europe and disseminated to a wider audience through our website, social media, publications and meetings.

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Start date

January 2012

End date

December 2014

Duration

36 months

EPDA representation

Lizzie Graham
Susanna Lindvall
Chiu Man

Consortium partners

Project co-ordinator:

NeuroNova AB
Fiskartorpsvägen 15 A-D
SE-114 33 Stockholm
Sweden


Contact person:

Anders Haegerstrand

CSO NeuroNova AB


Tel: +46 (0)8 786 09 00
Email: anders.haegerstrand@neuronova.com


Participants (alphabetical)

  • European Parkinson Disease Association (United Kingdom)
  • Karolinska University Hospital (Sweden)
  • King’s College London (United Kingdom)
  • Klinikum-Bremerhaven (Germany)
  • Life Science Governance Institute (Austria)
  • Lund University (Sweden)
  • Lund University Hospital (Sweden)
  • NeuroNova AB (Sweden)
  • Oxford Radcliffe Hospital (United Kingdom)
  • Tonic Life Communications (United Kingdom)
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Start date

January 2012

End date

December 2014

Duration

36 months

EPDA representation

Lizzie Graham
Susanna Lindvall
Chiu Man

Parkinson's Disease Café - Oxford

Parkinson's Disease Cafe - Oxford

Learning about new investigative treatments

When: Wednesday 3rd July 2013, 10:00-13:00

Where: Oxford Town Hall, St. Aldate's, Oxford, OX1 1BX

Audience:

  • People with Parkinson’s disease, their families and carers; Parkinson’s disease nurses; other healthcare professionals with a particular interest in Parkinson’s disease
  • People who want to know more about clinical trials and new research in Parkinson’s disease and learn about new investigative treatments.

Downloads

Agenda

NB: Refreshments (tea & coffee) to be provided on arrival

 

Time

Session

Presenter

10:00

Welcome and introduction

  • Outline of programme for the day
  • Objectives of meeting explained
  • Introduction to speaker panel

 

Alex Green (Department of Neurosurgery, John Radcliffe Hospital, Oxford)/ Ray Chaudhuri (NPF Centre of Excellence
Kings College Hospital, London) Joint Chairs

10:10

Future developments in Parkinson’s disease  

  • Update on new and novel invasive therapies and interventions, which could potentially be available in the future:
    • Protein therapy, including protein growth factor (rhPDGF-BB)
    • Gene therapy
    • Cell therapy

Ray Chaudhuri and Alex Green 

11:10

Q&A session

All

11:25

Clinical trial involvement: the patient perspective

  • What it means to participle in a clinical trial
  • What is the role of the PwP?
  • What happens after the study (if successful / unsuccessful)?
  • Where can you get more information / support?

Representative from Parkinson’s disease patient group – delivered via video

11:45

Coffee break

 

12:00

Breakout sessions

  • PwPs/carers to break out into smaller groups where they can:
    • Discuss their concerns of entering a clinical trial, in particular involving the therapies presented
    • Discuss what would make them more comfortable participating in a clinical trial with the therapies presented
    • Ask questions in a smaller, more informal setting

All

12:30

New drug development

  • The process of drug development
    • Phases of development (from pre-clinical to Phase I,II, III, IV etc.), including time taken to develop any drug / success rate
    • Statistics on how many drugs do not make it past each stage of development
    • Getting a new drug to the market, what steps are involved after a successful Phase II/III trial (registration, Phase IV and long term follow-up commitments)
    • Regulatory authority perspective - differences between a “classic” small molecule oral drug and an invasive brain therapy
    • Clinical trial design, the need for placebo control, even in studies with invasive therapies, practical and ethical challenges

Keypad voting (for consideration): Incorporate multiple choice questions for audience to increase interactivity of meeting e.g. could be asked to estimate time taken to develop a drug before being given the answer

Alex Green

12:50

Q&A session

All          

12:55

Meeting close

An opportunity for any final comments, revisit the day’s objectives and assess if these have been met

Ray Chaudhuri and Alex Green

13:00

Lunch (buffet style)

 

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Start date

January 2012

End date

December 2014

Duration

36 months

EPDA representation

Lizzie Graham
Susanna Lindvall
Chiu Man

Parkinson's Disease Café - Lund, Sweden

Cafémöte om Parkinsons sjukdom - Att lära sig mer om nya undersökande behandlingar

Skulle du vilja få veta mer om kliniska prövningar och ny forskning om Parkinsons sjukdom?

Kom och delta i vårt Café om Parkinsons sjukdom och lär dig mer om nya undersökande behandlingar.

Tidpunkt: Fredag den 15 november 2013, 10:30 – 13:30

Plats: Aulan, Entrégatan 7, Centralblocket 40, Getingevägen 4, 222 41 Lund

Deltagare: Personer med Parkinsons sjukdom, deras anhöriga och vårdgivare; läkare och sjuksköterskor som arbetar med Parkinsons sjukdom; andra vårdgivare med särskilt intresse för Parkinsons sjukdom.

Mötet kommer att ge dig följande:

  • En chans att få lära dig mer om kliniska undersökningar och nya kirurgiska ingrepp som syftar till att behandla Parkinsons sjukdom på ett mer effektivt sätt
  • Råd, insikter och diskussioner om hur man fattar svåra beslut om deltagande i kliniska undersökningar
  • En möjlighet att ställa frågor till våra experter på Parkinsons sjukdom

Downloads

 

Agenda

Click here to download the full agenda

 
 
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