Pharma companies to share experimental compounds with UK researchers

A ground-breaking collaboration project between Medical Research Council in UK and seven leading pharma companies has been announced, as drugmakers agreed to share data on their experimental pharmaceutical compounds. British academics will now be able to use pharma’s existing findings to further test these compounds and explore if they could be improved or used for other indications.

This is an incredibly useful step for both research and also in terms of improved cooperation with the pharma industry, with a huge potential for improving the health of patients in the UK and worldwide.

Full article on this innovative collaboration is available on MRC website (click here to access) but for the benefit of our readers full text also copied below:

Seven pharma companies offer up compounds to UK researchers

21 Jul 2014

UK researchers will be granted access to a ‘virtual library’ of deprioritised pharmaceutical compounds through a new partnership between the Medical Research Council (MRC) and seven global drug companies, announced today by Business Secretary Vince Cable.

AstraZeneca, GlaxoSmithKline, Janssen Research & Development LLC*, Lilly, Pfizer, Takeda and UCB will each offer up a number of their deprioritised molecules for use in new studies to improve our understanding of a range of diseases, with a view to developing more effective treatments.

The compounds have undergone some degree of industry development, but have all stalled at some point in early testing – often because they are not sufficiently effective against the disease in question. However, they may still be useful against other diseases with shared biological pathways.

These compounds are incredibly valuable to academic researchers, who can use them to understand how a disease takes hold in the body and how it might be stopped or slowed down. It is hoped that re-purposing such compounds could lead to the development of new medicines for many debilitating conditions. And because the compounds have already undergone some preliminary development, such as safety testing, any new treatments arising from the research could reach patients much faster.

Projects funded through a previous compound sharing initiative between the MRC and AstraZeneca are already demonstrating success in this area, with the first human trials of a new treatment for chronic cough getting underway (see case study below).

Professor Sir John Savill, Chief Executive of the Medical Research Council, added:

“Our ground-breaking compound collaboration with AstraZeneca attracted a huge amount interest from the academic community and saw the MRC award £7 million for research into Alzheimer’s, cancer and rare diseases. We’re now building on this success by expanding into a rolling programme with seven companies that will allow the academic community to access even more assets for use in innovative research projects. By funding studies using these compounds, which otherwise would not be carried out, we will enable scientific breakthroughs that will improve the health of patients in the UK and worldwide.”

A full list of available compounds will be published later this year, when UK scientists will be able to apply for MRC funding to use them in academic research projects. There is no fixed budget for the programme, which will make the compounds available on a continuous basis via the MRC’s normal response-mode funding mechanism. It is hoped that more companies, and more compounds, will be added as the scheme progresses.

Stephen Whitehead, Chief Executive of the Association of the British Pharmaceutical Industry (ABPI), said:

“This partnership between the Medical Research Council (MRC) and seven pharmaceutical companies is a fantastic example of open innovation that benefits both industry and academia by opening up new interesting avenues for research that may not otherwise be available, or even redirecting towards other diseases. The ABPI and our members are committed to greater collaboration with UK researchers and the whole of the academic community to improve our understanding of diseases so that we can continue to develop life-changing medicines for the benefit of patients. “

Research proposals will be submitted to the MRC, which will independently judge the scientific quality of the applications and award funding accordingly. The rights to intellectual property (IP) generated using the compounds will vary from project to project, but will be equitable and similar to those currently used in academically-led research.

Case study: from acid reflux to chronic cough

A number of the projects funded through the MRC’s previous compound sharing collaboration with AstraZeneca, launched in December 2011, are already beginning to bear fruit.

In Manchester, clinical trials are underway to see whether a drug designed originally to treat gastro-oesophageal reflux disease can be ‘repurposed’ to treat chronic cough.

Cough is the single most common reason that people seek medical care. It is thought that one in five people in the UK suffer from chronic coughing (lasting longer than eight weeks), which can have a huge impact on their quality of life.

Previous work by The University of Manchester researchers, led by Professor Jacky Smith, found that in around half of people with chronic cough, the cough reflex is related to gastro-oesophageal reflux, where the stomach contents escape back up into the food pipe causing a burning sensation.

It is hoped that the repurposed drug, which was not found to be helpful in patients with heartburn who were already taking acid-blocking treatments, may be successful in improving cough.

Further information

*A Johnson & Johnson company in collaboration with Johnson & Johnson Innovation

To request an interview with Professor Jacky Smith or an MRC spokesperson, or one of the seven companies involved in the partnership, contact Hannah Isom in the MRC press office on 0207 395 2345 (out of hours: 07818 428 297) or email press.office@headoffice.mrc.ac.uk.

SOURCE: MRC. (21 July 2014). Seven pharma companies offer up compounds to UK researchers [Press release], Retrieved from http://www.mrc.ac.uk/news-events/news/seven-pharma-companies-offer-up-compounds-to-uk-researchers/

NEWSLETTER 5 – June 2014

We have just finalised our 5th edition of our MDS UK Newsletter.

It is a bumper issue – with 16 pages – as we had a lot of information and news to cover.
In the past, we had editions of 8 and 12 pages.
We would appreciate your comments and feedback, in order to keep improving our newsletter for you, our readers.
Also let us know what else you’d like to read about – or if you’d like us to feature more – or less – of certain topics.

As ever – all registered members of MDS UK will receive a paper copy sent to their home address by the end of June.
If you have not received yours by the 1st July – please call or email us, so we can check your registration details.

All hospitals will also receive a stock of newsletters.
If your hospital is not registered with us, please contact us – and we’ll mail you all relevant information.

Patients and families – if you can’t see our leaflets and newsletters in your hospital – please ask staff to contact us – or let us know – we’ll send stocks of material to your hospital.

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June 2014

Our fifth edition of the MDS UK Newsletter is now out. Click the image to download.

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Previous editions of our newsletters and how to order them for hospitals can be found here:
https://mdspatientsupport.org.uk/what-is-mds/newsletter/

A new and very promising research project is being conducted at the University of Edinburgh with an aim to generate red blood cells in laboratory, using stem cell technology. Ultimately it is hoped that these red blood cells could be given to patients instead of using human blood donors. Using lab-generated blood, which is also infection-free, is thought to offer additional benefits particularly to those relying on regular transfusions.

Although the scientific project is still in its early stages, Dr Emma King – one of the researchers working at the University of Edinburgh – is eager to include patient views on using lab-generated blood. The team would like to set up some face-to-face interviews in Scotland to gather opinions from different groups of patients.

She sent us this message to identify MDS patient interviewees:

“My name is Dr Emma King and I am a researcher at the University of Edinburgh, based in a research group which looks at social science to do with the life sciences.

 I am currently working with a team of scientists who are seeking to grow red blood cells in the laboratory, with the aim of eventually reducing the requirement for human blood donations. My job is to find out what people think about this new technology.

 I am looking for a small number of volunteers who are transfusion dependent and live in Scotland to take part in an interview. This will involve a discussion with me about your experiences with MDS and your thoughts towards this potential new blood product. We are not able to pay you, but we are happy to travel to your home or another convenient location. The interview will last around an hour and will be voice recorded. You are welcome to have a friend or relative join in the interview with you. This project has full ethical approval from the University of Edinburgh and I am happy to provide more information about how this data will be stored and used”

Project conducted by:

Science, Technology and Innovation Studies (STIS)
School of Social and Political Science
The University of Edinburgh
Old Surgeons’ Hall
High School Yards
Edinburgh EH1 1LZ

Please visit their website for further details.

If you are interested in being interviewed by Dr Emma King, please contact our Main Office:

Tel: 02077337558
Email: mds-uk@mds-foundation.org

Rare Disease Day – A special reception at the Science Museum, London

When: Friday 28th February 2014

Time: 12noon to 2pm

Where: Exhibition Road, South Kensington, London, SW7 2DD

On the occasion of Rare Disease Day, a special reception has been set up in conjunction with a year-long campaign called Challenge the Unchallengeable, which aims to increase understanding in the UK of rare diseases and their impact on patients’ lives.
A sculpture will also be unveiled on the occasion – featuring 2000 raised hands – described as follows:
“Your hand will become part of a powerful, contemporary art installation that will be designed by an aspiring British artist. The installation will bring 2,000 hands together as 1, thus serving as a lasting reminder of our combined efforts against rare diseases.  This piece of art will be prominently unveiled on 28th February (Rare Disease Day) 2014, so you will have the opportunity to go and see your hand in the installation and meet others who have made a difference”.

Website http://www.raiseyourhand.co.uk/news

Patients and families are invited to attend this reception – which MDS UK will attend as well – to mark this special day for MDS as a Rare Disease.
We hope to see some of you there.
If you are planning to attend – PLEASE MAKE SURE YOU RSVP – for catering purposes:

Juliet – PR for Raise Your Hand
Tel 01273 20835601273 208356 – or – 0778 465 25200778 465 2520
Email julietmorrison@btconnect.com

Please specify name and number of people attending.  Thank you.
Only a few spaces are now left for the exclusive unveiling this art installation on #RareDisease Day.

More information about this campaign
The campaign aims to increase awareness that as many as one in 2,000 people are affected by a rare disease, many of which are relatively unknown to the general public and in some cases, even to healthcare professionals, yet they have a devastating impact on patients and families.

The idea is that by running stories in the press on people who have a rare disease, tied into the story of the campaign,that we attract 2,000 people to the Raise Your Hand website.
This event is organised and sponsored by pharma company Alexion.

More events and information about International Rare Disease Day 2014

This Rare Disease Day 2014 video is now available in seven different languages for you to enjoy and to share. With the focus on Care this year, the 2014 video poignantly demonstrates the kind of care people with rare diseases need and deserve, and the ways family members, health professionals, and the entire rare disease community are working together to provide care.

Created in Barcelona by production company These Glory Days, the Rare Disease Day 2014 video is accompanied by the music of Delorentos, who generously offered the use of their aptly named song Care For.

Besides These Glory Days and Delorentos, a big round of applause goes out to the many individuals and families living with a rare disease who appear in the video, including Maria and Judit; Luis; Roman and Mireia and Carla; Arturo and David; Carla and Bertie and Jordi; Isaac; Nacho and David; as well as the health professionals and researchers who participated. The cooperation in joining together to create the Rare Disease Day 2014 video is emblematic of the unity and solidarity patients and families, professionals and policy makers, researchers and industry are demonstrating to find treatments and care for people with rare diseases. Be a part of the Rare Disease Day momentum – share the Rare Disease Day 2014 video and let’s show the world that it is entirely possible to Join Together for Better Care.
Louise Taylor, Communications and Development Writer, EURORDIS

Feel free to organise your own Rare Disease Day locally – and let us and the following organisations know what you have planned:
Rare Disease UK http://www.raredisease.org.uk/rare_disease_day_2014.htm
And http://www.rarediseaseday.org/news
Genetic Alliance UK http://www.geneticalliance.org.uk/index.html
Facebook – Rare Disease Day https://www.facebook.com/rarediseaseday

EURORDIS http://www.eurordis.org/

Rare Disease UK: “We will be holding receptions in England, Scotland and Wales to mark Rare Disease Day 2014. We will also work with our colleagues in the NIRDP (Northern Ireland Rare Disease Partnership) to hold an all-Ireland event in Belfast on Rare Disease Day.

This year we will be focusing on the importance of implementing the UK Strategy for Rare Diseases which was recently launched on 22nd November. More information on the UK Strategy is available here.”

To register at one of their events across the UK, please follow the links below:
Welsh Assembly, Cardiff – Tuesday 11th February 6pm – 8pm
Scottish Parliament, Edinburgh – Tuesday 25th February 6:00pm – 8:00pm
House of Commons, London – Wednesday 26th February 4pm – 6pm (This event is now full, please check back at a later date for available tickets)
Riddell Hall, Belfast – Friday 28th February 10:30am – 3pm

Contact Campaign – Rare Disease UK needs your help in contacting politicians in each of the UK’s home nations to raise awareness of rare diseases and to encourage them to attend their parliamentary events. You can download template letters and find out more information here.

Your activities to mark Rare Disease Day – we encourage you or your organisation to conduct awareness or fundraising activities of your own to tie in with Rare Disease Day.Things members have done in the past include:
– Organising conferences/events
– Conducting awareness days in schools
– Producing Rare Disease Day materials/literature
– Holding cake/jumble sales etc
– Conducting local media activity
– Holding special Rare Disease Day promotions in charity shops
– Holding stands at hospitals with information about their condition
– Holding Rare Disease Day activities in the workplace

Follow Rare Disease Day on Twitter: @rarediseaseday

Important new survey started by EHA – the European Haematology Association.
EHA is interested in finding out if certain medicines are not available in some parts of the country – or in some parts of Europe.
This survey can be completed by anyone who is aware of a shortage or lack of a medicine in the UK or Europe:
Patients, relatives, doctors, nurses, patient groups.