Administration:
Dr L. Bindl
Pediatric Intensive Care Unit
University Children´s Hospital - Bonn, Germany
e-mail: bindl@mailer.meb.uni-bonn.de
fax: (049) 0228 / 287-3314

Verwaltung : Dr L. Bindl, UKK Bonn
Technische Betreuung : Dipl.-Inform. Yehya Mohamad

Pediatric Network ARDS/ Hypoxic Respiratory Failure

Description

Hypoxic respiratory failure in children is a rare condition, the incidence being incidence below 1/100.000. It undergoes continuous changes in origin and treatment strategies. Treatment requires a high input of ressources. The outcome depends on the underlying disease as well as on high quality intensive care.

Due to the diversity of underlying conditions and the low incidence controlled trials to evalute these strategies are extremely difficult or nearly impossible. "Registries, that carefully compile patients treated by a given therapy may be a reasonable, and immediately available, alternative to randomized studies that protect the access of children to life-saving technologies " (Beaufils 1997).

Aims

The continuous and compiled observation of many cases from different institutions in some kind of network may allow to identify: changes in etiology over time, changes in outcome over time, variation in outcome of patients with similiar etiology and severity of ARDS in different institutions, variation in outcome of patients with similiar etiology and severity of ARDS in relation to certain treatment strategies, identification of risk factors.

The knowledge of these factors may allow the definition of quality standards (average and optimal outcome for defined subgroups), elimination of risk factors, better planning of collaborative trials.

The data base may facilitate the contact between institutions and physicians caring for similiar subgroups of patients with the possibility to do investigations for those subgroups and to exchange experiences between single institutions.

The network may provide adresses of physicians doing research in this field, an overview on ongoing studies and a forum for discussion.

Currently available data base

Currently available there is a on-line recherchable data base containing anonymized data of more than 300 patients. All entered data fulfill certain definitions (http://www.meb.uni-bonn.de/ards/definitions.html)The data are collected using . including the following items: Year of diagnosis, age, gender, acute causative disease, underlying chronic disease, outcome, severity and duration of ARDS , ventilator therapy strategies, alternative treatment strategies, MOF (http://www.meb.uni-bonn.de/ards/example.html).

Access

The data base is accessable to a closed user group. It is protected by individual passwords and user identification. Participation is allowed to any pediatric intensivist who gives written consent to the following: prospective input of all own ARDS patients, provision of a short description of the own unit (yearly number of admissions of patients beyond neonatal age and number of ventilator days), agreement, not to provide data to non-participants (http://www.meb.uni-bonn.de/ards/participation.html.The access is possible with any usual internet browser . The server is located at the University of Bonn.

Input is allowed only for registered participants, directly via internet, or by fax or surface mail. Correct data input is facilitated by preselected values and limits for input fields.

On-line recherche is possible for any registered participant.

Data handling and safety

The questionnaire data are automatically inserted into the data base. Correction of false inputs has to be achieved via the network administration.

Patient data are anonymized by removal of the date of birth and of the patient«s name. Individual patients theoretically could be identified combination of contributing institution, diagnosis and year of occurence. The name institution therefore is encoded. The password, user-ID and institutional code is given to the participants via surface mail. Data transfer is nor yet encrypted.

The data handling fulfills the requirements of European law (Directive 95/46/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)

Publication

Publication of data should take place under the authorship of "Paediatric Network ARDS" listing all contributers as authors. Delivery of data to any external person or institution is allowed only with agreement of all participants.

Outlook

The participants may meet yearly at ESPNIC- meetings. The last meeting took place at the 3^rd World Congress of Paediatric Intensive Care at Montreal in June 2000. There technical aspects and contents of the data were reevaluated. Further technical improvement in  network facilities (forum for dicussion, list of adresses relevant for treatment or scientific wok-up of ARDS) can be achieved. It would be possible to reduce the work-load for administration of the network. 

References

Beaufils F, JC Mercier, C Farnoux, C Saizou, B ThŽbaud. Acute respiratory distress syndrome in children. Current Opinion Ped. 1997,9:207-212.

Bindl L, Demirakca S, Fedora M et al.Network ARDS in children : Cause and course of ARDS : A comparison of two periods in time. Pediatric Critical Care Medicine 2000,1: S38

Bindl L, Moamad Y, Ruechard J. Collaborative data collection via internet: Easy to manage with standard software. Pediatric Critical Care Medicine 2000,1: S21

GreenTP, Timmons OD, J Fakler, FN Moler, AE Thompson, MF Sweeney for the Pediatric Critical Care Study Group: the impact of extracorporal memrane oxygenation on survibal in pediatric patients with Acute respiratory failure. Crit Care Med 1996,24:323-9.

Kühl G, R. Appel, Lasch P, Bindl L (für die Arbeitsgemeinschaft ARDS im Kindesalter): ARDS im Kindesalter: Ergebnisse einer Umfrage in Deutschen Kinderkliniken. Monatsschrift f Kinderheilkunde 1996.

Contact

e-mail bindl@mailer.meb.uni-bonn.de

last update: Freitag, 23-Okt-1998 10:21:54 MES by Yehya Mohamad
e-mail: ymohamad@mailer.meb.uni-bonn.de