Information on studies using the ESID Database and the collaboration guidelines.
Last updated on April 4, 2012.
We would like to invite you to participate in the PedPAD Study concerning Clinical and laboratory characteristics of children with hypogammaglobulinemia as documented in the ESID online Registry.
Most of the currently published clinical data on hypogammaglobulinemia concern adult patients; because of their maturing immune system, these data cannot simply be extrapolated to children. An overview of pediatric data will be helpful for doctors caring for these patients, and may form the basis for further clinical studies.
We want to use the data collected in the ESID Registry to give an overview of all clinical, laboratory and geographical features of children with hypogammaglobulinemia, and describe possible
Dr. Esther de Vries
June 2011
Data collection has been closed, data is now being evaluated
The Chest CT in Antibody Deficiency Group is an international and interdisciplinary group that works together to improve pulmonary diagnostics in patients with antibody deficiency syndrome.
One of the projects of the Group is to uniformely document chest CT scans. With a documentation list of CT findings, pulmonary pathologies are rated according to the same criteria. The list is available for download here, together with the clinical data sheet which should also be filled in for these patients:
Documentation sheet for Chest CT (47k)Updated CRF June 27, 2011
Clinical data sheet for Chest CT (68k)Updated July 5, 2011
These documents and further information is available at the website of the group (www.chest-ct-group.eu). An image repository, also available at the group's website, is available to provide a comparable rating:
Image repository (pdf)
Findings can be documented in the ESID registry, several national registries, or sent by fax to Ulrich Baumann at the study centre.
The documentation sheet has been updated in June 2011. The CRF in the ESID registry has been adapted accordingly
On behalf of our working group we kindly invite you to join our study.
Please find more information in the invitation letter.
Submission of data is possible both via the ESID Database or on a paper questionnaire (see download below).
The data forms are available both in the subregistry DOCK8 (Combined ID) and Hyper IgE syndrome (HIES).
We are looking forward to your help!
The DOCK8 Working Group
May 2011
Mail contact: Michael.Albert@med.uni-muenchen.de
The data collection has been closed, data is now being evaluated
The Steering Committee for Nijmegen Breakage Syndrome (NBS) has formulated diagnostic criteria (see below).
Our aim is now to validate those diagnostic criteria via the ESID database. Therefore, we have marked the fields in the database which are relevant for the diagnostic criteria of NBS in blue.
We now ask all documenting centres who attend patients with NBS to fill in the blue fields for their patients in the NBS subregistry.
We will post the result of this validation study on the ESID Website.
Yours,
Ewa Bernatowska
Head of NBS Steering Committee
Data items for NBS study (10k)This file contains an overview of the data items that are required in this study.
Updated on July 29th 2010
NBS appeal (293k)NBS diagnostic criteria (26k)Last updated Feb. 2006
for the collaboration among ESID documenting centres
The amount of data in the ESID database is constantly on the increase and already offers good opportunities for research collaborations. If you are interested in a specific collaboration with other centres, we would like to notify you about the steps to take.
• Please contact the registry working party at registry@esid.org and describe the type and purpose of the required collaboration.
• The Head of the Registry in the capacity of ESID board member will decide on the ethical tenability of the request.
• The registry team will contact potential partners and inform them that a researcher has requested to start collaboration with the centre and specific patients who are registered in the ESID online database.
• Contact details of centres that respond positively are then forwarded to you.
• If the partners come to an agreement on collaboration, the cooperating centres will communicate this to the ESID registry team and ask for a password for the inquiring researcher to view their data. Data access for users from other centres is always coded and independent of the type of system used (coded or personalised) in either centre.
• The registry team will send a password to the inquiring researcher.
It is recommended that cooperating centres set out their own written agreement on details such as which fields in which sub-registry are available for access and details on collaborating publications.
Publication of data from the ESID database must first be approved by the ESID Board. The support of the ESID online database should be acknowledged when research using data from the database is published.
We are looking forward to your research projects!
