miércoles, 13 de junio de 2018

EURORDIS - The Voice of Rare Disease Patients in Europe: EURORDIS Community Advisory Board (CAB) Programme

EURORDIS - The Voice of Rare Disease Patients in Europe

Eurordis, Rare Diseases Europe

The Voice of Rare Disease
Patients in Europe

EURORDIS Community Advisory Board (CAB) Programme

What is a Community Advisory Board (CAB)?

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 (ie, access). They provide expert advice to all stakeholders involved in the research, development and service provision of medical treatments.
CABs were created in the 90s for HIV/AIDS, hepatitis and breast cancer. Some rare disease European federations, with or without EURORDIS support, have already gained experience with CAB-like initiatives.

Does there need to be a CAB in my disease area?

For most of history, medical science has evolved with little to no input from the people being studied. CABs change that, and help to design, carry out and communicate on studies that are more rational and inclusive from a patient’s point of view. By doing so, a bond of trust between the patient and scientific community is formed.

What exactly do CABs give input on?

On a wide variety of topics that their members are the experts on: patient outreach, education on research, clinical studies and their design, criteria for participation, informed consent forms and processes, compassionate use programmes, retention of participants, and reporting on results. Input is also possible on disease-specific topics such as clinical endpoints and how they are measured, meaningful patient relevant outcomes (PROMs), disease registries and their common elements or factors that are meaningful to patients when measuring health and social outcomes.

Why now?

More than ever, patients and the patient perspective are seen as a way to make medical research and clinical studies more impactful and possibly quicker and certainly more efficient.

Who are CAB members?

CAB members are people living with the specific condition, a close family member or carer, and/or a member of a patient organisation that works with the disease.

How can I join a CAB in my disease area?

If a CAB for your condition exists, put yourself in direct contact with the group running the CAB. 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 you are able to work in English, you are interested in science and interested in expanding the role of patients in research, you can dedicate at least two hours per week to the CAB, and you have a stable internet connection, you will be very welcome!

Starting a new CAB: The EURORDIS CAB Programme

What if a CAB does not exist for my disease area? Working with the European federation or network of patient organisations for your disease and with the support of EURORDIS, you can begin the journey!
The EURORDIS CAB Programme assists patient organisations in setting up and structuring a Community Advisory Board for their disease area. Depending on the administrative capabilities of your Network, EURORDIS can help in distinct ways to get a CAB going.
The EURORDIS CAB Programme includes some 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, promotion of the programme, and evaluation and possible eventual scientific publication.

I don’t understand the “science” very well. How can I learn?

There are various ways of learning about the processes and science behind medicines development, at the pace you need. As part of the EURORDIS CAB Programme, EURORDIS can offer specific training at a CAB meeting. There are also the EURORDIS Open Academy materials online that can be accessed for free. The European Patients' Academy (EUPATI) run by European Patients’ Forum (EPF) has a clinical training course online in 8 languages, the content of which EURORDIS contributed to greatly. Whatever way you want to learn, EURORDIS can help.

My patient group is small with limited resources. Can I really do this?

Get in touch and let’s see how to make this work for your organisation!                         

EURORDIS Webinar: Community Advisory Boards – what and how?

Page created: 08/02/2018
Page last updated: 17/05/2018

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