Do you want to take part in a survey on the costs of CF?

This area is for parents and carers of people with Cystic Fibrosis to provide and receive support regarding CF issues.

Do you want to take part in a survey on the costs of CF?

Postby lbanks » Thu 14 Mar, 2013 10:07

What is the true cost of Cystic Fibrosis for people with Cystic Fibrosis and their carers?

The Social Economic Burden and Health-Related Quality of Life of Patients with Rare Diseases in Europe Project (BURQOL-RD) is a study designed to answer this question. The aim of the study is to give an accurate estimation of the cost of the condition per patient, and its impact on quality of life for patients and carers. The project goes beyond any previously implemented surveys by considering the ‘overall cost’ (direct and indirect) to caregivers, who dedicate their time and energy to look after patients.

Cystic Fibrosis (CF) is one of ten rare conditions to be investigated by the study which is taking place across eight participating European countries, including the UK.

How can I help?
To get meaningful and reliable results, and make the project as representative as possible, we need your help. We are asking people with CF and their carers to take the time to fill out the questionnaire. If you have not already done so, please visit now and fill out the survey. The survey is completely anonymous. It will take about 20 minutes to complete, but responses can be saved and it does not have to be completed in one sitting. The survey closes in March 2013 and all responses must be received before then.

I’m just one person. What effect will my response have?
Every participant adds a valuable insight into the costs of rare conditions and provides valuable information into how to address the issues that impact on those affected by rare conditions such as CF. The findings of the project will be crucial in defining the current effects of rare conditions on society, and to assess the effectiveness of new policies, opening a way to study the cost-effectiveness of new treatments, including orphan drugs.

The response so far has been promising but more responses are still needed to provide a true insight into CF across Europe. Through this, BURQOL-RD will generate a complex and reliable estimate of the social economic burden and health-related quality of life of patients with rare conditions and their caregivers in Europe.

You can complete the survey at

I have some questions. Who should I contact?
If you have any questions, please do not hesitate to contact the British Coordinator, Julian Walker ( To stay up to date with the project you can join the community on Facebook under ‘Burqol-rd international’.

The Project is led by the Canary Foundation of Investigation and Health (FUNCIS) with the collaboration of 11 associated partners, eight national alliances, three umbrella organisations and hundreds of experts. The Project in the UK is supported by Genetic Alliance UK and by the London School of Economics and Political Science Health Research Centre (LSE Health). This advert arises from the BURQOL project which has received funding from the European Union in the framework of the Health Programme. The sole responsibility lies with the project partners and the Executive Agency is not responsible for any use that may be made of the information contained therein. BURQOL-RD is a 3 year project under the 2nd Programme of Community Action in the Field of Public Health, that commenced in April 2010 and is promoted by the DG Sanco.

Where can I see the results of the survey?
The results will be analyzed and published by the London School of Economics in scientific literature. The results of the survey will also be publicly available and will be publicised through Genetic Alliance UK

We would like to thank everyone who has filled out the survey already. If you haven’t filled it out yet, please visit now and make sure your response counts.
Many thanks
Louise Banks, PR Manager, Cystic Fibrosis Trust
0208 290 7912

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Louise Banks, Senior Communications Manager, Cystic Fibrosis Trust
0208 290 7912
Posts: 155
Joined: Mon 12 Sep, 2011 10:28
Location: Bromley

Postby Mumof3 » Thu 14 Mar, 2013 10:13

Just to let you know, only the second of those links works.
Posts: 145
Joined: Wed 2 Jan, 2013 18:17

Postby lbanks » Thu 14 Mar, 2013 10:24

Many thanks, the correct link is:

Thanks for taking part.
Louise Banks, Senior Communications Manager, Cystic Fibrosis Trust
0208 290 7912
Posts: 155
Joined: Mon 12 Sep, 2011 10:28
Location: Bromley

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