Role description:Independent Chair, Cystic Fibrosis Registry
Reporting to:Chair ofTrustees
Purpose of role:Strategic leadership of theUK Cystic Fibrosis (CF) Registry Development Committee, providing direction and support aligned to the Trust’sstrategic plan and provide advice to the Senior Leadership Team on the implementation of the recommendations of the Rowan Review (2013).
This is a time limited post – The Development Committee will cease to exist upon the discharge of its agreed duties
Remuneration:Expenses may be payable
Time commitment:To be agreed
Main duties:
Provide advice to the Senior Leadership Team of the Cystic Fibrosis Trust on the phased implementation of the recommendations of the Rowan report. In particular, ensure the smooth transition of the existing CF Registry to the new structures as recommended by the Rowan report.
Provide strategic support to the Director of Research and Care and Head of Registry during this time of transition, particularly in the area of transition to a new platform.
Manage the relationships between the Development Committee and the current UK CF Registry Steering Committee until the new governance structures have been put in place.
Inform the development and implementation of the Committee’s terms of reference to ensure good governance, transparency and compliance.
Work with the Trust to ensure membership criteria of the Development Committee is representative of the multidisciplinary nature of stakeholder groups, integral to the understanding and management of cystic fibrosis.
Engage with key stakeholders and partners, including people with cystic fibrosis, on the development of the registry, and providing leadership and wider advocacy of the registry and its value to the Trust and the wider cystic fibrosis community.
Oversee the establishment of working groups (project teams) to advise the Development Committee on particular recommendations of the Rowan report as and when additional expertise is needed.
Be accountable for the advice provided to the Trust on the implementation of the UK CF Registry strategic plan.
Work with the Trust to provide advice toincrease the visibility and reputation of the UK CF Registry amongst high level stakeholder and interest groups such as theDepartment ofHealth, NHSEngland, research communityetc.
Person specification
The successful candidate must be able to demonstrate the following:
Experience and understanding of registry
Genuine interest in the vision and purpose of the charity, with a commitment to people living with cystic fibrosis
Proven ability of chairing at a board level with an ability to engender consensus
Strategic vision to lead effectively during periods of rapid change and uncertainty
Proven ability to present compelling and persuasive arguments to senior stakeholder groups as well as the ability to translate complex messages to the wider cystic fibrosis community
Ability to offer independent thought and judgement, remaining resilient when challenged
Ability to work effectively as a member of a team while contributing his/her own viewpoint
A commitment to Nolan’s seven principles of public life: selflessness, integrity, objectivity, accountability, openness, honesty and leadership
An understanding and acceptance of legal duties, responsibilities and liabilities of trusteeship
Other information
Time commitment: One day per week
Board meetings: The number of board meetings will be agreed upon appointment. There will also be additional meetings and away days as required.
19062014
19062014