Job description

Job title: Director of Science and Research

Location: National Office, 61A Suffolk Street, London SE1 0BU

Responsible to:Chief Executive

Responsible for:The Science and Research team together with interns and volunteers

Main purpose of the role:

Muscular Dystrophy UK supports research to find effective treatments and ultimately cures for all types of muscular dystrophy and related neuromuscular conditions. It will require determined and influential leadership to bring together the science community, funders, industry and of course patients and families living with muscle-wasting conditions to develop our impact and accelerate progress in the UK and internationally. This role will provide the strong and effective leadership needed.

  1. Develop and lead the implementation of the Research Strategy of Muscular Dystrophy UK with the aim of accelerating the path to effective treatments and ultimately cures at a time when we can identify change and opportunities in the scientific and research funding environments.
  2. Develop partnerships and external relationships, nationally and internationally, with a wide range of individuals and organisations including researchers, industry, funders and individuals and families living with muscle-wasting conditions.
  3. Ensure effectivecommunication ofboth the outcomes of research and research opportunities to external audiences and promote the key role and impact of Muscular Dystrophy UK as a major research funder driving a faster path to treatments and ultimately cures.
  4. Provide effective management of the charity’s research grants to ensure milestones and outcomes targets are met.
  5. Provide Directorial leadership within the Senior Executive team and ensure the set objectives are achieved both across all areas of research and in meeting the charity’s strategic aims.

Key areas of responsibility:

  1. Develop and lead implementation of the research strategy to accelerate the path to effective treatments and ultimately cures
  • Develop, implement and review the charity’s research strategy and policies to ensure Muscular Dystrophy UK is positioned to maximise our influence and effectiveness in research.
  • Provide leadership to the UK neuromuscular research community to develop a research agenda that accelerates the path to effective treatments and ultimately cures.
  • Establish an informal group of key opinion leaders from the scientific community, including translational and clinical researchers, industry, venture capital, funders and regulators.
  • In partnership with the research community, identify priority areas, gaps and opportunities as well as policy issues to be addressed as we develop plans and strategies to maximise impact.
  1. Ensure Muscular Dystrophy UK is aware of issues and developments in neuromuscular research, clinical trials and regulatory fields in the UK and internationally and develop relationships to enable usto influence these issues
  • Develop effective relationships with international organisations such as Treat-NMD and the ENMC as well as with partner charities in other countries to identify opportunities to work together in funding specific research, developing best practice and influencing the policy environment.
  • Working closely with the Director of Care, Campaigns and Information and the Chief Executive, build and maintain effective relationships with the NIHR in England and similar agencies in Scotland, Wales and Northern Ireland to ensure there is sufficient UK clinical trial capacity to undertake all trials proposed for potential treatments for neuromuscular conditions.
  • Working with the Chief Executive and senior policy colleagues in the charity, engage with regulators such as the EMA, NICE and the SMC to remove barriers to accessing new treatments that emerge through clinical trials and also ensure reimbursement is available through the NHS in England and the devolved countries.
  1. Maximise awareness of the important role and impact of Muscular Dystrophy UK in research, including campaigning for rapid access to emerging treatments, and encourage involvement and support for our work through an effective research communications strategy
  • Develop a high impact research communications strategy, in conjunction with colleagues, to increase awareness of neuromuscular research and to establish and promote our leadership position.
  • Develop a personal profile as a leader and leading voice in the neuromuscular research community on behalf of individuals and families living with the conditions.
  • Along with other charity spokespersons, comment persuasively to the media on issues related to research and neuromuscular conditions, often at short notice.
  • Seek out opportunities to develop the neuromuscular research community through a range of events including conferences, seminars and workshops and through regular communications.
  • Work with the charity’s policy and campaigns team and the Chief Executive on European and UK research policy issues and contribute to Parliamentary discussions.
  • Provide effective, high-level representation at external events and forums where expertise in neuromuscular research is required.
  • Provide effective, high level representation to inspire major funders and supporters with the Director of Development and the Chief Executive and also work with relevant colleagues to maximise the potential of research activities for fundraising.
  • Review and develop the involvement of individuals and families in the charity’s research agenda to ensure they are engaged and their voice is heard widely.
  1. To have overall responsibility for the research programme and budget and to lead and manage the Science and Research team
  • Provide leadership to the Directorate, setting high standards for all activities, acting as a role model at all times and ensuring objectives are achieved in support of the charity’s strategic aims.
  • Ensure the charity only funds research of the highest quality and that our research programmes and grants meet agreed milestones and outcomes.
  • Take steps to ensure good governance of all research activities including regular reviews of the terms of reference and membership of the Research Panel (currently known as the Medical Research Committee), the Lay Panel and the systems and procedures in place in the Directorate.
  • Ensure researchers report against outcomes, alert us to major steps such as the start of clinical trial recruitment and dates of forthcoming publications and also assess the potential for further research.
  • Develop a framework for managing ownership of intellectual property and data and also maximise the potential commercial benefit to the charity.
  • Seek out opportunities to maximise the impact of the charity’s research funds through leveraging external funds and developing funding partnerships while protecting the charity’s interests and reputation at all times.
  • Promote a culture of first class customer care internally and externally and ensure the views of individuals and families living with muscle-wasting conditions are reflected in the activities of the Directorate.
  • Develop, coach and motivate staff and ensure effective HR management is in place in the Directorate.
  1. Play a full role in the charity as a key Director and member of the senior executive team
  • Work with the Chief Executive and Director colleagues to develop and implement the charity’s strategy and plans.
  • Attend meetings of the Board and relevant committees and prepare papers and briefings on key strategic developments and research issues.
  • Identify and develop creative and innovative approaches as well as practical solutions to opportunities and issues.
  • As a Director, undertake corporate assignments as required and act collectively on behalf of the senior executive team.
  1. General responsibilities
  • To contribute to the overall development of the Charity and to be flexible within broad remit of the role.
  • To undertake other tasks as requested by the Chief Executive including acting as deputy from time to time on relevant topics.
  • Follow organisational policies and practices including the Equal Opportunities policy.

Revised – April 2016

Person Specification

1. Education/training and knowledge

  • At minimum, a PhD in a biological science or a medical degree and ideally (but not essential) some experience or training in the field of neuromuscular research.
  • Very good understanding of research environment, including translational and clinical research, and knowledge of drug development and role of biotech and pharma industry.

2.Experience

  • Proven experience in leading the development, implementation and review of a research plan or strategy.
  • Experience of working effectively at a senior level to develop strategic partnerships with external organisations.
  • Experience of bringing potential partners together in pursuit of common objectives or a shared agenda and creating effective collaborations.
  • Some experience of working with biotech or pharma companies to promote research and access to treatments.
  • Experience in developing a successful, high performing staff team.

3.Skills and personal attributes

  • Excellent communication skills to influence scientists, funders and lay people.
  • Able to present relatively complex scientific research, concepts and ideas with an engaging, positive and influential style.
  • Analytical thinker able to develop ideas with both the Directorate team and the senior executive team and identify topics and approaches to translate into effective strategic and operational plans.
  • Able to encourage and identify new opportunities and take them forward effectively.
  • Resilient and self-motivated, with the determination and drive needed to develop neuromuscular research and, working with the senior team, move the charity forward.
  • Able to manage complex workloads, for self and team, and ensure deadlines and outcome targets are met.
  • Skilled in all aspects of HR management as well as effective in budget management and preparing financial projections.
  • Confident and able to communicate complex science in talking with the media.

4.Other requirements

  • Commitment to work outside of normal office hours and at weekends (for example to attend patient information days) with some travel in/outside the UK.
  • Willingness to develop an understanding of disability issues and the impact of muscle-wasting conditions.
  • Commitment to working within the policy and principles of Equal Opportunities.
  • Support for the aims, goals and values of the charity at all times with a commitment to lead on and support the work of the charity in achieving these.

Revised - April 2016