Neutrophils help fight infection. The aims of the registry are to monitor the clinical course of naturally occurring SCN with a view to assess treatments, adverse events, growth, development and haematological parameters, establish a physician network and allow for future research. The worldwide registry has around 500 patients registered while the Australian registry has 40 of these. When the worldwide registry began in early 1994 their target was to have 1000 patients enrolled within 5 years. If you know of any SCN patients then please approach your doctor with a view to having these patients registered.
Registration involves the completion of patient consent and registration form.
The registration form covers such things as treatments, adverse events, physical examination, blood test results and depending on the type of SCN a possible bone marrow aspirate. After registration is confirmed then 6 monthly follow up forms will be required to be completed. These forms do not take much time to complete provided the appropriate results are available. A web site giving more details of the Australian registry's aims and registration requirements was set up recently.