Depending on the agreement of the Working Group, one of the initial objectives of the patient and public involvement programme is to establish and support a group of people affected by these conditions, which will be the forum through which the core activities of the patient and public involvement programme are delivered. The Patient and Public Involvement Forum (PPI Forum) will be coordinated by the Patient and Public Involvement Coordinator. The Coordinating Centre will advertise nationally for membership of the PPI Forum through national disease associations and informal networks.

The PPI Forum will have a number of key functions including:

• To act as a forum for discussion, and the generation of ideas to ensure that the interests of patients, carers and the public are fully taken into account within the work of the DeNDRoN
• To provide a supportive environment in which people can become increasingly involved in all stages and all levels of the research process in respect of improving clinical research for the benefit of people affected by these conditions
• To produce, with the support of the Road Map Goup, good practice guidelines about different methods and levels of involvement of people affected by these conditions in research
• To provide input from people affected by these conditions into the DeNDRoN Clinical Study Groups (via CSG membership)
• To provide input from people affected by these conditions into the adoption of trials onto the DeNDRoN (via Adoption Panel membership)
• To provide input from people affected by these conditions into the DeNDRoN Operational Steering Group (via OSG membership)
• To produce, with the support of the Road Map Goup, a training programme for the local networks to facilitate the active participation of people affected by these conditions in research; and develop the skills of researchers
• To provide input into ad hoc projects from people affected by these conditions

PPI Forum members will receive training and support to help them fulfill any specific roles they take on, and to become as effective as possible in using their views, perspectives and experience to improve clinical research for the benefit of patients, carers and the public. A mentoring programme will be developed to support involvement in scientific committees, with pre- and post-meeting briefings available.

The DeNDRoN Coordinating Centre will establish a PPI Forum area within the DeNDRoN website and newsletter to inform patients, carers and the public about neurodegenerative disease research and develop methods to inform study participants about the progress of the study that that they are involved in as well as the results.