Information

June 10th, 2020 – Covid-19 and CF – Update

In collaboration with EURORDIS and the Rare Barometer Voices, CF Europe has been collecting real world data from patients and carersMore than 900 respondents throughout Europe filled in the survey!

>> Check out the overview of the Rare Barometer survey’s results

 

May 12th, 2020 – Covid-19 and CF – Update

These are the last days to fill in the Rare Barometer SURVEY launched by CF Europe and EURORDIS, which will close on Sunday the 17th May! Almost 650 people with CF and carers throughout Europe already responded. These powerful data will help our strategic work to achieve better access to care and treatment for all people with Cystic Fibrosis across Europe.

 

May 7th, 2020 – Covid-19 and CF – Update

The ECFS and the ECFS-Patient Registry are working on the collection of sound clinical data on people with CF having been exposed to Covid-19 in Europe. Initial data are now available though they must be considered with caution. Indeed, the collection is on-going and the numbers will be regularly updated. The latest information can be found on the ECFS website: https://www.ecfs.eu/covid-cf-project-europe

Besides, a worldwide study led by the UK Cystic Fibrosis Trust in collaboration with Registries from around the world was recently published on the Journal of Cystic Fibrosis. Of 40 cases of COVID-19 described in people with CF, 70% have recovered and no deaths was reported.

> Find the lay summary of the study and a video by Rebecca Cosgriff, study author and Director of Data & Quality improvement at the Cystic Fibrosis Trust in the News.

In parallel, CF Europe in collaboration with EURORDIS is collecting real world data from patients and carers to understand how everyone is handling this unprecedented situation. More than 600 responders throughout Europe already filled in the survey! Amongst them, more than half were patients, most of the other responders were parents. Very first glimpse at the data related to treatment notably shows that more that half of patients had to cancel their rehabilitation therapies, e.g. physiotherapy sessions, whilst, fortunately, more than ¾ of responders did not experience shortage in any of their routine drugs or medicines.

 

April 20th, 2020 – Covid-19 and CF – Update

Over the last weeks CFE has been collaborating with many stakeholders in the CF community to follow up on the impact of the Covid-19 crisis on the lives and health of people with CF.

In order to assess the impact of this unprecedented health crisis both from the perspective of the patients and of the healthcare professionals, two surveys are being launched:

  • one surveillance carried out by the European Cystic Fibrosis Society (ECFS) aims at healthcare professionals to allow the collection of clinical data;
  • one questionnaire launched by the European Organisation for Rare Diseases (EURORDIS) is addressed to patients in order to collect real-life data.

Please do fill in the survey and share widely!

> Read more here: 2020-04-20 Communication Covid-19

 

April 10th, 2020 – Covid-19 and CF – Update

CF Europe continues to work closely with the European Cystic Fibrosis Society (ECFS) and the wider CF community in order to monitor how this exceptional situation impacts people with CF and their families. Learn more about the various European initiatives implemented to collect and communicate information in our latest release: 2020-04-10 Communication Covid-19.

And to keep up during these challenging times, find some insightful answers about the Covid-19 pandemic in an interview by the European Lung Foundation, and some tips and tricks to manage anxiety around Covid-19 by a CF psychologist.

 

March 31st, 2020 – Covid-19 and CF – Update 

In order to evaluate quickly how Covid-19 affects people with CF, the whole European CF community is mobilised to collect data in a reliable and systematic fashion. CF Europe is having regular (virtual) meetings with the European Cystic Fibrosis Society (ECFS), the ECFS patient registry (ECFSPR), the ECFS clinical trial network (CTN) and patient representatives from all over Europe.

> Read more here: 2020-03-31 Communication Covid-19

 

March 23rd, 2020 – Covid-19 and CF

The facts – What do we know?

At the moment there is no official data available about people with CF being tested positive for Covid-19. CF health care professionals are now overwhelmed with extra work in many countries and cannot be expected to provide exhaustive information on the short term. Anecdotal information from people with CF tested positive for the virus has been shared through social media, but of course this is not scientifically sound information.

Therefore, there is still a lack of consensus regarding recommendations about daily follow-up of people with CF. Each patient is unique and we strongly invite you to contact your doctor would you have any questions regarding your treatment or symptoms.

Our actions – What are we undertaking?

  • CF Europe pro-actively interacts with ECFS and the ECFS-CTN to gather and communicate reliable information about the quickly evolving situation. We work jointly in the effort of collecting data about how and where the virus is hitting the CF community. Our objective is to keep the CF community updated as timely as possible.
  • CF Europe is also following up on the work of the global harmonization group gathering the teams of the CF registry of the EU, US and Canada. Together, they will collaborate to collect longer term data on Covid-19 global impact on the CF community.

What can you do?

To prevent the spread of the virus and in support of healthcare professionals, we encourage you to follow the guidelines given by the World Health Organization and your national authorities.

In these times of crisis, it is particularly important to consult trusted websites for up-to-date information. Please find below links to official information sources that are updated regularly. We also advise that you refer to information published by your own national health authorities / ministries.

The staff of CF Europe continues to work from home and is dedicated to the following up of the situation to provide you with timely and reliable information.

Would you have additional questions or remarks to share, please do not hesitate to contact us.

 

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CFE informs its members on the progress of activities in CF research, care and lobbying, as well as general information about evolutions in the CF community. In addition, CFE enables sharing of best practice by organizing workshops and learning platforms.


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