Clinical
The ESID Clinical Working Party aims to support the collaborative clinical research and education among the centers in the ESID. In order to achieve this task following specific aims have been defined:
Aims:
1) To create and update the definition of primary immunodeficiency disorders (PIDD)
2) To foster clinical surveys and trials for patients with PIDD
3) To develop consensus statements for diagnosis and therapy of PIDD
4) To support quality and comparability of diagnostic procedures for PIDD
5) To support exchange between centers for clinical education
The ESID together with the LASID has been instrumental in the definition of several PIDD. The discovery of new PIDD as well as the ongoing change in the understanding of known PIDD requires an ongoing update on the definition and diagnostic guidelines of PIDD. The ESID clinical WP sees it as its task to provide such definitions in close cooperation with the other large immunodeficiency organisations. Based on these definitions it will be an ongoing challenge to define consensus statements on diagnostic guidelines and therapy in order to improve patient care throughout the ESID. Important aspects in our understanding play clinical surveys and trials for PIDD. These require the participation of many international centers, which can be facilitated by the ESID. The exchange of diagnostic tools, quality control as well as clinicians for training will not only improve comparability between ESID centers but also improve the collaborative effort which represents one of the greatest potentials for successful clinical research within the ESID.
The clinical working party closely collaborates with the other ESID working parties.
How to participate?
The clinical WP regularly meets during the biennial ESID meetings. Any ESID member clinician can participate and propose trials to the head of the clinical WP to be placed on the ESID website. Currently no funding by the ESID is available.
Current projects:
· Update on the definition of CVID
· Survey: Splenectomy in CVID (closed)
· Survey: BCG in SCID patients (ongoing)
· IPIDnet: Immune phenotyping in Immunodeficiency
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New York, June 4, 2011
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On behalf of our working group we kindly invite you to join our survey.
Online submission via the ESID Database is now open!
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In order to expand IPIDnet I would like to also ask all of you who see patients with NEMO deficiency, WAS to contact me since I would like to collect a representative group of patients to determine the characteristics of their immunological phenotype.
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The diagnostic criteria for the most common PID are listed here.
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IPID stands for “Immune phenotyping in Immunodeficiency”. IPID is an ESID authorized internet based open accessible platform which serves scientists and clinicians in the area of phenotyping of immune cells in Immunodeficiency.
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