The Voice of Rare Disease
Patients in Europe
Community Advisory Boards - connecting patients with clinical research
Community Advisory Boards (CABs) are groups established by patient advocates that facilitate discussions with the sponsor of research being carried out in their disease area.
Through a CAB, patients offer their expertise to sponsors of clinical research (a research body or company). For example, by being involved before a clinical study starts, patients help ensure the study is designed to take into account their real needs, resulting in higher quality research.
CABs were created in the 1990s for HIV/AIDS and later for hepatitis. With anywhere from seven to sixteen patient advocate members, a CAB is involved in scientific as well as policy-related issues such as access.
In the past, medical science evolved with little to no input from the people being studied. CABs changed that, and help to design, carry out and communicate on studies that are more inclusive of the patient’s point of view. By doing so, a bond of trust between the patient and scientific community is formed.
CABs give input on a wide variety of topics that their members are experts on, including but not exclusively: patient outreach, clinical studies and their design, criteria for participation, informed consent forms and processes, compassionate use programmes, retention of participants, and reporting on results.
CAB members are people living with the specific condition, a close family member or carer, and/or a member of a patient organisation.
If you are a patient representative, you can contact the patient organisation in your country or the European/ international federation for your disease to see if they are aware of an existing CAB for your disease. Any CAB should have open contacts, a vetting process and adhere to the Code of Practice for the Relations between Patients’ Organisations and the Healthcare Industry.
If a CAB does not exist in your disease area, you can work with the European federation or network of patient organisations for your disease and with the support of EURORDIS to create a CAB.
The EURORDIS EUROCAB Programme assists patient organisations in setting up and structuring a CAB for their disease area and includes common principles and tools for patient groups and sponsors: capacity building of patient advocates, peer-to-peer exchange of experiences across CABs, quality monitoring of the process and outputs of CABs, transparency and prevention of competing interests, and evaluation and possible eventual scientific publication of research. Last week, the World Duchenne Organization held their first meeting of the new Duchenne Community Advisory Board formed under the EURORDIS EUROCAB initiative.
Learn more about Community Advisory Boards or get in touch with Rob Camp, EURORDIS Patient Engagement Senior Manager CABs, if you are interested in setting up a CAB through the EURORDIS Programme: email@example.com.
You can also watch this webinar in which Rob explains more about how to set up a CAB.
Attend workshop on CABs
On 16 October 2018, EURORDIS will hold a EURORDIS Round Table of Companies workshop in Barcelona on patient engagement in the product life cycle and CABs. Discussions at this meeting will focus not only on existing CABs and their added value, but also how to work with patients in new disease areas and start a truly collaborative experience.
As well as Members of the EURORDIS Round Table of Companies, this workshop will be exceptionally open to other healthcare companies, non-profit foundations and academics. Patient representatives are also invited to attend with a fee waiver. Please email Emilie.firstname.lastname@example.org to register (participants will need to cover the cost of their travel/ hotel).
Eva Bearryman, Communications Manager, EURORDIS