Pediatric Fungal Network - ISHAM

Investigators
2 November 2006
Page 2
Additionally, if you know of interested colleagues at other centers who are interested in joining the
group, please have them email me. The website will also be the location for entry of clinical data through
an electronic CRF (eCRF) format. This capability is not easily evident now on the website, but the
infrastructure has already been designed. In the future you all will acquire usernames and passwords for
access to the data entry aspects.
It was thought that the first projects for such a new network should focus on gathering fundamental
epidemiologic information, for only through accurate collection of this data will we be positioned to
effectively design the future clinical trials in the field. In order to start smaller and allow room for
growth, we think infections with both Candida and Aspergillus would capture most of the relevant
patients. We have constructed steering committees for the two types of infections, and the chairman for
the Candida group is Theo Zaoutis (Children’s Hospital of Philadelphia) and for the Aspergillus group it
is Bill Steinbach (Duke University). The steering committees for each project are charged to develop an
effective, concise (likely 3 pages maximum), eCRF to capture the data. Based on previous known
interests we have selected several individuals from the PFN to sit on those committees, but please email
the two chairs if you are also interested in participating in the eCRF development phase. The studies
themselves will begin after eCRF development. Many of the involved investigators and sites have
clinical research coordinators who are working on other related projects who are able to enter in the data
for an additional eCRF for these studies. For those sites without such a resource, a concise and simple
eCRF will be quite beneficial. There will also likely be the requirement for IRB approval at many
centers for a prospective observational epidemiologic study, and we will send an already approved IRB
template to all of you for use in drafting your own institution’s IRB documents.
As mentioned earlier, at present the PFN does not have the funding to pay investigators or sites on a
per-patient recruitment basis. This work is being done by all of us for the chance to dramatically alter the
field in a novel fashion as well as the many opportunities for analysis and publication of the data. The
data we accumulate will be unprecedented in scope and will be spread around the interested investigators
who want to analyze aspects of it for publication. In the future we will devise a publication scheme so
the data is optimally used by all. Initial funding has been secured for the website and administrative tasks
(future conference calls, mailings, etc). I have also successfully gathered additional funding promises
from other companies and am currently lobbying other organizations (foundations, CDC, NIH, etc.) for
additional assistance. To date this consortium has been very well-received by all.
The PFN will operate as a democracy of colleagues who all have common goals. Future conference
calls will be scheduled for the current and future working groups and we invite all comments and
thoughts on how to best achieve our goals.
Sincerely,
Bill Steinbach
On behalf of the Pediatric Fungal Network