The IPA established its own Community Advisory Board (CAB) for Pompe disease in 2019. The main difference with industry-driven advisory boards is that the IPA’s CAB is a patient-driven endeavor that is organized and owned by the Pompe patient community. A CAB is a group of patients or advocates who offer their expertise, in a neutral setting, to sponsors of clinical research, on overall program development, single clinical trials, and other aspects beyond the research program. A CAB helps also ensure that clinical studies are designed to consider the real needs of patients, resulting in higher quality research. The IPA CAB is composed of 23 members from 10 countries spanning across 3 continents and representing the full spectrum of Pompe disease. The first IPA CAB meeting was held on October 28, 2019 in San Antonio, Texas, and was in the form of a multi-company round-table, with 15 CAB members attending in person and 5 sponsors attending as observers. The IPA also gave the opportunity to host online CAB meetings and has already facilitated many virtual one-on-one CAB meetings with several different industry partners. We are constantly working with all parties to continue this valuable program, and an increasing number of industry partners have expressed their interest in the IPA CAB.
For further enquiries, to schedule a CAB meeting or to apply as a CAB member, please email to fabiodipietro@worldpompe.org.