DATABASE ARDS/Hypoxic Respiratory Failure in Children

Supported by ESPNIC

 

http://www.meb.uni-bonn.de/ards

 

 

Form 1.

AGREEMENT ON DATA HANDLING

 

The database contains personaldata. In accordance with the directive95/46/EC of the European Parliament and of the Council of 24 October 1995 on the protection of individuals with regard to the processing of personal data and on the free movement of such data” the storage and/or distribution of data belonging to identifiable persons must be avoided. Furthermore, “ account should be taken of all the means likely reasonably to be used either by the controller or by any other person to identify the said person.” Within the database this is achieved by removing all initials and dates of birth and by encoding the institution, where the patient has been treated. It is impossible to identify a single person merely through accessing the database.

 

  1. Access to the complete database is open to all physicians, caring for children with ARDS, who fulfill the following conditions:

-         Basic data on the number of ventilated patients and theICU structure are provided.

-         Data for all patients treated in a given year are entered on 1 May of the following year at the latest

-         The aggreement on datahandling is signed.

  1. Cumulative basic data (e.g. total number of patients, mortality, causative diseases) are provided on the homepage and updated twice a year.
  2. All publications are submitted under the authorship of “ Pediatric ARDS Database Group”, appending all contributors in alphabetic order. The submission requires the consent of all contributors. If the consent is refused, the data must not be used.
  3. The raw data are given to the regular participants on request, on floppy disk. In this case, the codes, which would otherwise allow the tracking of a certain patient to a certain ICU, are removed.
  4. The data may be used for research at single institutions in order to provide comparative data on hypoxic respiratory failure. Compiled data subsetes may be used for this purpose without further consent of all members, if the study is approved by an ethic committee.
  5. Single participants may compile their own data for publication, without the consent of other members. Any exchange of patient data between members has to be in accordance to European law /Directive 95/46/EC. Official Journal L 281, 23/11/1995 p 0031-0050.
  6. Unpublished data are not given to non members. Unpublished data are not provided to companies or persons with economic interest in the use of these data.
  7. No sponsorship by pharmaceutical companies is accepted for either technical realization, data input or data processing.

 

I agree to the conditions.

 

Date                                                     Signature

 

DATABASE ARDS/Hypoxic Respiratory Failure in Children

Supported by ESPNIC

 

http://www.meb.uni-bonn.de/ards

 

 

Form 2.

QUESTTIONAIRE FOR ARDS NETWORK PARTICIPANTS

 

Please mail back to

bindl@ukb.uni-bonn.de

or fax 0049-228-2873267

 

 

 

Full adress (incl. E-mail and fax)

 

 

 

 

 

 

 

 

 

Type of ICU

 

                        Neonatal and paediatric                                yes            no

 

                        Paediatric multidisciplinary                     yes             no

 

                        Paediatric , specialized                              yes            no

                        (which subspeciality ?)

                                                                                                __________________

 

Number of Admissions in 2000                                         __________________

 

Number of ventilated Patients in 2000

 

                        Total                                                               __________________

 

                        Neonatal                                                        __________________

 

                        Paediatric                                                       __________________