New York, June 4, 2011
Participants:
Helen Chapel, Mary Ellen Conley, Luigi Notarangelo, Klaus Warnatz
Absent: Amos Etzioni
Aim of the meeting:
To discuss the first steps for the update and development of diagnostic criteria of PID.
Discussion:
There was general agreement that several diagnostic criteria need to be updated and some to be newly developed. Currently there is no accepted standard procedure how to achieve this. In order to facilitate the operational procedures an executive board needs to be founded. For the general acceptance of the procedure a broad geopraphical representation and involvement of different societies and especially IUIS is important.
Suggestions:
An executive Board of five people with experience in PID from different parts of the world and belonging to various organisations with an interest in PID should be nominated.
Suggested participants:
Antonio Condino-Neto (Latin America)
Mary Ellen Conley (North America, IUIS)
Yu-Lung Lau (Asia)
Reinhold Schmidt (Europe, IUIS Committee Chairman Clinical Immunology)
Mimi Tang (Australia, IUIS)
Klaus Warnatz (Europe, ESID)
All participants were addressed and agreed to participate.
Tasks of the board:
1) Agree on the purpose and intended use of the diagnostic criteria.
2) Produce a SOP for the development of updated or new diagnostic criteria in PID. This SOP needs to be communicated to IUIS and the continental societies of immunodeficiency.
3) Publish the SOP through the societies and invite experts to found committees to suggest areas of need and develop diagnostic criteria.
4) Develop a master copy for diagnostic criteria which will be used by the experts committees.
5) Supervise the ongoing activities by ensuring that experts in the field are including for each disorder, the correct procedure according to SOP, time lines (if not sufficiently controlled by expert committees), communication of the proposed draft of diagnostic criteria to societies, a correct review process (needs to be defined by the board in agreement with societies), by confirming a correct procedure and by communicating the final draft to societies.
Mode of action:
Decision processes should be based on consensus and no veto.
Communication is by Email, tele- or videoconference.
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