An Interview with Dr Naba Bora – Advocating for NF2 inclusion at the CDMRP

Advocure NF2 Inc wrote to and asked Dr. Naba Bora of the Congressional Directed Research Programs (CDMRP NFRP) for clarification on CDMRP’s grant funding mechanism, as well as to explain its present NF Consortium centers lack of ̳NF2 expertise.

Q. Can you please tell us if the Consortium grant funding is up for renewal in 2011? If so what, if anything, can Advocure, as well as the NF2 community, do to enable renewed funding that includes an NF2 center or two?

A. The CDMRP NFRP does not offer renewals for grants. With appropriate justification for continued support of an existing initiative such as a Consortium, a competition based process would be implemented to allow submission of a new proposal. This process would allow applications from any organization so it would not be restricted to the existing grantee.

Because of acquisition regulations,we cannot release any information about future initiatives until fundinghas been appropriated and recommendations have been made by the Integration Panel. Information will be made available to the public through the release of a Program Announcement. The Consortium was developed to address several problems that NF investigators were facing in conducting clinical trials. To address these problems it was determined that there was a lack of adequate infrastructure which is needed to support such trials and that a consortium would be better able to do so.

It was also felt that such an initiative would be complicated to establish and more so if it was initially required to address two distinct disorders, NF1 and NF2. Another consideration was the current state of the science. Because NFRP funding is not guaranteed from year to year it is difficult to planfor more than one year at a time. When the NF Consortium was developed we were fortunate enough to have received $25M which enabled us to commit the extensive resources needed to support such a large undertaking.

With the advances in NF2 research there are greater opportunities to purse NF2 trials so the NF Consortium has set up a NF2 Committee and representatives have been in discussions with the NF2 scientific community about conducting NF2 clinical trials. The NFRP truly appreciates the dedication of Advocure and its representatives.

Q. It is our understanding the present plan is to utilize the centers that were originally chosen for their NF1 expertise. While there is currently an “NF2 Committee” within the Consortium, there is no plan toexpand or change the original structure of the Consortium. This seems like fitting a square peg into a round hole?

A. Since the intent of the NF consortium was first to conduct NF1studies before expanding, only sites with the capability to recruit sufficient numbers of NF1 patients were selected.It would not be possible to conduct NF2 trials withoutincluding additional NF2 specific sites. The operating procedures of the consortium include the ability to add sites as needed for specificstudies and the consortium is aware of the need for NF2 sites to support a trial.
We are confident that the leaders in the NF field will work together to advance NF2 research and to find effective treatments.

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