The World Duchenne Organization is happy to announce their first Duchenne Community Advisory Board Meeting (under the Eurordis EUROCAB initiative) from June 6-9 in Amsterdam.
Patient Community Advisory Boards (CABs) are groups established and operated by patient advocates. They facilitate discussions in a neutral setting on the latest developments, and challenges related to medical research and procedures in your disease area with the company or body conducting the research.
A CAB is a group of patients who offer their expertise to sponsors of clinical research. For example, by being involved before a clinical study starts, patients help ensure that clinical studies are designed to take into account their real needs, resulting in higher quality research. CABs, with anywhere from seven to twenty patient advocate members, are involved in scientific as well as policy-related issues (i.e., access). They provide expert advice to all stakeholders involved in the research, development and service provision of medical treatments.
The World Duchenne Community is committed to supporting all the patient centred research institutions, academic and private, in the development of and access to effective, affordable and safe treatments for Duchenne. To reach this common goal, cooperative and transparent interaction with no conflict of interest issues is needed now more than ever.
The strategic priority of the DMD (World Duchenne) community is to support optimal trials only. Academic and industry partners who share common principles, code of conduct and ethics will be supported from the preclinical phase and throughout the regulatory and post marketing hurdles.
Via its CAB, the World Duchenne Community is committed to providing the necessary resources and its accumulated experience over the last decades, from preclinical, clinical, post marketing and access in this common endeavour to accelerate access to effective treatments for DMD. This experience forms the basis from which the World Duchenne Community Advisory Board will enrich a dedicated team of scientific and clinical experts under confidentiality.