11094435908632364994308624

  Rare Revolution Magazine
  • Home
  • Rare Revolutionaries
    • Our Charity Partners
    • Revolutionaries Community
    • Join the Rare Revolution - Charities sign-up
    • Our Corporate Friends
  • Blog
  • Back Issues
  • #RareYouthProject
    • RYP Blog
  • The People of RARE
    • CEO Series
  • APP & Downloads
  • Media

RARE INSIGHTS

IRDiRC Goals 2017-2027: New rare diseaseĀ  research goals for the next decade

13/8/2017

0 Comments

 
Picture
The International Rare Diseases Research Consortium (IRDiRC) is proud to announce the new vision and goals for 2017-2027. IRDiRC, officially launched in 2011, was originally conceived with two main goals: to contribute to the development of 200 new therapies and the means to diagnose most rare diseases by the year 2020. The last six years have seen considerable progress on these goals: the goal to deliver 200 new therapies was achieved in early 2017 – three years earlier than expected – and the goal for diagnostics is
within reach. These accomplishments were celebrated at the 3rd IRDiRC Conference in Paris in February 2017.



In light of this, IRDiRC initiated a year-long collaborative process to devise a new set of global rare disease goals for the upcoming decade. IRDiRC aims to accelerate progress in the short-term with three goals for the Consortium, and ambitiously push the limits of what is currently possible in the longer term with an audacious vision for the field, all with rare disease patients’ lives in mind.

The new vision: Enable all people living with a rare disease to receive an accurate diagnosis, care, and available therapy within one year of coming to medical attention.

In order to work towards this bold and ambitious vision, IRDiRC has set three goals for the next decade:
1. All patients coming to medical attention with a suspected rare disease will be diagnosed within one year if their disorder is known in the medical literature; all currently in-diagnosable individuals will enter a globally coordinated diagnostic and research pipeline​.
2. 1000 new therapies for rare diseases will be approved, the majority of which will focus on diseases without approved options.
3. Methodologies will be developed to assess the impact of diagnoses and therapies on rare disease patients.
The progress on the previous goals has shown that the international rare diseases research community is eager to share knowledge and experience, and work collaboratively across borders in order to bring diagnoses and therapies to patients. These new goals can only be achieved with fundamental changes to the way science is conducted, shared, and applied to the care of rare disease patients. IRDiRC members have committed to catalyze such changes and we hope that others will share and help with this commitment to action. It is time to build new bridges and raise the bar for rare diseases research worldwide.

For more detailed information on the past progress and future actions, please read three papers that have just been published by IRDiRC:
- Nature Commentary: http://www.nature.com/uidfinder/10.1038/548158c
- CTS Past Perspective: http://onlinelibrary.wiley.com/doi/10.1111/cts.12501/full
- CTS Future Perspective: http://onlinelibrary.wiley.com/doi/10.1111/cts.12500/full

To apply to become a member of IRDiRC, please see the below link: http://www.irdirc.org/about-us/become-a-member/
​

About the International Rare Diseases Research Consortium (IRDiRC): IRDiRC was formed to unite public and private sector funders of research, patient advocacy groups, and scientific researchers to advance rare diseases research worldwide. For more information about how IRDiRC is accelerating rare diseases research progress with the ultimate goal of improved health for people living with rare diseases worldwide, visit www.irdirc.org
0 Comments

Improving UK genetic test reports

3/8/2017

0 Comments

 
Picture

​The Winton Centre for Risk and Evidence Communication (
https://wintoncentre.maths.cam.ac.uk/) are working with representatives from the National Health Service, Association for Clinical Genomic Science, and the University of Cambridge to improve current genetic test reports.

Current genetic test reports are written for genetic experts to understand and then relay back to patients. We are working on creating a report that is friendlier to non-geneticists. This is so that patients and other general healthcare workers can be more involved with their medical decision-making.

We are recruiting participants to help us find out which reports, or features of reports, are good/bad so that together we can design a new one that is understandable by anyone who reads it. All that we require is your opinion and a small amount of your time.
 
Who we are looking for
  •   Participants aged 18 and over 
What we will do:
  • Focus group sessions, 1-to-1 interviews, or online surveys. (Your choice!)       Before any sessions there will be a short questionnaire to complete
  • Focus groups will involve an interactive session led by a researcher with 4 to 8 participants discussing and answering questions about features of reports (which will be provided during the session)
  • Interviews will be exactly the same but 1-to-1 (online) with a researcher
  • Online surveys will present a report and questions to be answered
 
When will we do it:
  • Focus groups will be held between 14th-16th and 29th-31st of August
  • Interviews will be held between 3rd-13th and 21st-28th of August
  • Evening times outside of working hours will be available
  • Online surveys will be sent out 5th-10th September
 
Where we will do it:
  • Focus groups will be held at the Centre for Mathematical Sciences (http://www.cms.cam.ac.uk/visiting/ free parking is provided)
  • Interviews will be conducted online via video call service (Skype, appear.in, Facetime) or phone call
  • Online surveys can be completed wherever you have an Internet connection
 
What do you get?
  • An opportunity to contribute towards national genetic test report design
  • £10 per hour for focus groups and interviews (sessions will last a maximum of 1.5 hours)
  • Travel expenses up to a maximum of £20 (receipts must be provided)
  • Survey participants are entered into a raffle for a £100 Amazon voucher
 
If you are interested in participating then please email Harry Gray (
hg384@cam.ac.uk) with your preference of focus group/interview/survey (if you have one) who will get in contact to arrange exact times/dates.
0 Comments

    Author

    Rare Revolution Editor

    Archives

    December 2020
    November 2020
    October 2020
    September 2020
    August 2020
    July 2020
    June 2020
    May 2020
    April 2020
    March 2020
    January 2020
    December 2019
    November 2019
    October 2019
    September 2019
    August 2019
    July 2019
    June 2019
    May 2019
    April 2019
    March 2019
    February 2019
    January 2019
    December 2018
    November 2018
    October 2018
    September 2018
    August 2018
    June 2018
    May 2018
    April 2018
    February 2018
    January 2018
    November 2017
    October 2017
    August 2017
    July 2017
    June 2017
    May 2017
    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    October 2016
    September 2016
    July 2016

    Categories

    All

Rare Revolution is published by NRG Collective, a not-for-profit media company specialising in rare disease content
Contact Us
Editor:  
   editor@rarerevolutionmagazine.com
​Advertising: rstewart@rarerevolutionmagazine.com

  • Home
  • Rare Revolutionaries
    • Our Charity Partners
    • Revolutionaries Community
    • Join the Rare Revolution - Charities sign-up
    • Our Corporate Friends
  • Blog
  • Back Issues
  • #RareYouthProject
    • RYP Blog
  • The People of RARE
    • CEO Series
  • APP & Downloads
  • Media