European Cystic Fibrosis Society

A Survey of The Impact of H1N1 Infection in Patients with Cystic Fibrosis 

Please read the letter and instructions below before proceeding to the online survey

Dear colleague,

In spring 2009 the WHO declared the H1N1 flu a pandemic. The rates of infection are increasing worldwide, and in the northern hemisphere the peak is expected to be reached this winter. The full impact of the current pandemic is not yet clear.

Patients with CF are considered at high risk for severe sequelae and death caused by the H1N1 virus. However, no data exist on the real consequences of H1N1 on CF lung disease.

The purpose of this survey is to collect information on documented cases of patients with CF infected with the H1N1 virus, which includes general characteristics of CF and data on the clinical status prior to and post infection, including hospitalizations and mortality.

We hope that this will be helpful for planning prevention, vaccination and tretments program in the future, since we will have to face yearly, seasonal and periodical pandemic influenza outbreaks.

We prepared a short anonymous questionnaire, accessible via the ECFS website, in order to collect relevant data. We hope that all CF centers will collaborate for this important survey. We did our best to make it simple, but still informative. Data will be stored at the server of the CF Center in Verona, Italy, and the results will be available to all of you via the ECFS website and its newsletter.

All instructions to enter data are available on the ECFS website. We are indebted to the president of ECFS, Prof. Stuart Elborn and the ECFS Board for their cooperation and for making available the ECFS site for this important project.

All the collaborating centers will be acknowledged and we hope to be able to present a preliminary analysis of the data at the next ECFS meeting in Valencia.

Yours sincerely,

Epidemiology Study

Effect of H1N1 on CF:
CALL CENTER IS:

Please read the instructions below before proceeding to the online survey

USER INSTRUCTIONS

1. When first accessing the system

a.  Enter ECFS site (www.ecfs.eu).
b.  Click on link to Special Projects - H1N1 study.
c.  You will be redirected to H1N1 questionnaire webpage.
d.  Click on register.
e.  Enter the information required.
f.  Create a password (this could be numerical or alfa-numerical. It is case sensitive, and there is no limit for the number of characters. We suggest to use no more than 7 characters).
g.  After completing the registration you will be directed to the initial page.
h.  To start you have to login.

2. For further accesses: steps 1a and 1b. Then just login with your username and password

3. Username and password cannot be changed

4. If you forget your password you should contact the call center.

5. Whenever you wish you can enter data and modify them while the study is open.

6. REMEMBER TO SAVE THE DATA EACH TIME YOU ENTER A NEW PATIENT.

7. There are no automatic control functions. The data will be controlled manually at the end of the study.

8. In case of  doubts you will be contacted by the Principal investigator.

CALL CENTER IS: