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CRN WM DeNDRoN Subspecialty Research Lead Role Description (Huntington's Disease)



The NIHR Clinical Research Network

The National Institute for Health Research (NIHR) is a multifaceted organisation funded by the Department of Health and Social Care to improve the health and wealth of the nation through research. A significant part of NIHR funding is devoted to the delivery of clinical research in England through the NIHR Clinical Research Network (NIHR CRN). NIHR CRN is tasked with supporting the rapid set-up and effective conduct of studies, so that researchers can produce the robust evidence needed to improve treatments for NHS patients while patients are able to access research that they may wish to take part in.

The NIHR CRN, is led by a national Co-ordinating Centre and operates through 15 Local Clinical Research Networks (LCRNs). Each LCRN drives clinical research delivery in its locality and champions clinical research in the NHS at every level. Nationally, leaders from the 15 LCRNs come together in communities of practice to coordinate activity, share best practice and engage in dialogue with researchers, funders, patients and other stakeholders.

In each of the 15 LCRNs the NIHR expects excellent clinical leadership to drive the performance and delivery of specialty portfolio research at a local regional level. A number of subspecialties have been identified as requiring local clinical leadership within the Neurological Disorders and DeNDRoN specialties. These key individuals will advise the LCRN core team on their subspecialty portfolio, act as local research champions in their disease area, and provide liaison with the national group(s):

LCRN Subspecialty Areas
Huntington's Disease (Vacant)
Motor Neurone Disease
Parkinson’s Disease

LCRN Subspecialty Research Leads are key to communication of the LCRN’s portfolio to their clinical colleagues and are essential to portfolio delivery, working collaboratively across the LCRN partner organisations. The Role includes raising awareness of and promoting the NIHR research portfolio among clinical colleagues in order to maximise the number of research active clinicians in the area, and supporting the LCRN core team in their responsibilities to provide disease specific site/feasibility intelligence, achieve reliable and timely delivery of a high quality, high-volume research portfolio suited to local patients’ needs. It is expected that the 15 LCRN subspecialty leads will interact with each other and the coordinating centre.

NIHR CRN West Midlands is comprised of the following member NHS organisations:

*We also engage with other providers of NHS services who are delivering Portfolio clinical research studies, as well as regional Higher Educational Institutes who generate Portfolio research.

The LCRN is hosted by The Royal Wolverhampton Hospitals NHS Trust. Subspecialty Research Leads may be appointed from any of the LCRN member organisations, but are expected to function within the requirements of the NIHR CRN WM contract. The role-holder is expected to work with stakeholders across the WM region including NHS organisations, private providers of NHS care, Universities and WM Academic Health Science Network in order to maximise West Midlands potential to recruit to studies within the specialty disease area.

This role is unpaid. It does however offer excellent career opportunities such as contributing towards clinical excellence awards, and networking opportunities for clinicians who wish to work at a regional and national level.

This role would suit a clinician who wishes to ensure the West Midlands population of patients, carers and staff access high quality research that intends to change the healthcare of the future.

It is predicted that this role is a minimum of 0.5 PA and up to 1 PA dependent upon the post holder’s organisational support to undertake this role.

Aims of the Role

The principal aim of this role is to ensure that the LCRN has an active and successful portfolio of research within the subspecialty area, meeting the priorities and needs of the local population and contributing to the national research agenda. This will include a balanced portfolio of research studies suited to patients with different disease subtypes, presenting at different locations. It is likely to include both academic and industry-sponsored research, and both interventional trials and observational studies. It may also include both high-volume research and some important but more challenging studies involving less common diseases or complex interventions.

To achieve this, the Role-holder will:

- Support the Neurological Disorders and DeNDRoN Clinical Research Specialty Leads (CRSLs) to define and implement the local strategy and goals in relation to their disease area.
- Promote the NIHR research agenda among colleagues and to the Multi-disciplinary Teams (MDTs), network at site-specific group meetings and at any appropriate local events and/or conferences.
- Work with the LCRN team, clinical colleagues and patient/public representatives to achieve a well-balanced subspecialty portfolio. This involves working with national colleagues to secure the placement of research within the West Midlands, selecting suitable existing studies from the national portfolio to open in the LCRN, taking into account local priorities, treatment pathways, skills and opportunities.

- Help the LCRN team address and overcome the challenges and problems of study set-up and delivery, e.g. by providing local intelligence on clinical priorities and service issues.

- Advise the LCRN Team on establishing sites and referral pathways for studies, so that as many as possible of the patients within the LCRN may be invited to participate in research.
- Advise the LCRN Team on under-performing studies and advise on and support in problem solving and overseeing corrective action to ensure successful performance of the subspecialty portfolio and therefore the NIHR High Level Objectives (HLOs).

The role-holder will also liaise with the NIHR CRN national Neurological Disorders and DeNDRoN Theme and the LCRN Team regarding engaging in planned future national studies, highlight areas of clinical need and research opportunities, and provide a ‘grassroots'
perspective of research priorities. There may also be opportunities to liaise with the Academic
Health Science Network (AHSN) West Midlands regarding progressing areas of research priority locally.

Outputs, performance management, appraisal, tenure

Appointments to the Role of Subspecialty Research Lead are made for two years, renewable two-yearly up to a usual maximum of 6 years. Appraisal and role renewal is performed annually by the relevant Clinical Research Specialty Lead and Research Delivery Manager (RDM) responsible for DeNDRoN, mental health and neurological disorders, during the 3 months prior to the end of each year period.

The key aims defining success at the Subspecialty level will be agreed between the Neurological or DeNDRoN Disorder CRSL, role holder and RDM but may include the following indicators:

- Portfolio: the number of subspecialty studies opened within-year as a percentage of potential studies that could have been opened.
- Portfolio: the securing of research that is generated outside of the West Midlands to recruit within the region.
- Portfolio: evidence of carrying out feasibility for studies and opening studies that provide a diverse portfolio to the West Midlands including academic and industry studies; interventional and observational studies; and opening studies at sites across the West Midlands geography.
- Portfolio: the number of subspecialty studies generated from within the WM.
- Participants: the number of participants recruited to NIHR portfolio studies in the subspecialty area as a region and within member organisations, supporting Trusts in achieving and surpassing recruitment targets.
- Delivery: the number of studies closing/tracking to time and target (academic/industry).
- Delivery: the number of studies recruiting the first participant within 30 days of required approvals.
- Other: comparisons between LCRNs, changes in the above metrics within LCRN over time, examples of best practice initiatives, number of subspecialty Principal Investigators in the WM, PPI engagement and other quality measures.

Expectations of Role-holders

The size of LCRNs, both by population and geographical spread, is highly variable. Similarly, there is wide variation in the size of the Subspecialties, in terms of patient incidence and current number of portfolio studies. Therefore there is wide variability in the size of the task of Subspecialty Research Leads, and in the time requirements of the role. Basic expectations of the role include:

- Interactions with the LCRN core team: Neurological Disorders / DeNDRoN Clinical Research Specialty Lead, RDM ± other LCRN staff. e.g Study Support Service, Chief Operating Officer; Clinical Director; CRN WM Early Contact and Early Engagement Team.
- A meeting at least twice per year to thoroughly review the subspecialty portfolio and plan ahead with the CRN DeNDRoN/LCRN team.
- Interactions with clinical colleagues within the locality.
- Face-to-face meetings, either as a specific Network subspecialty event, existing local subspecialty clinical meetings/events or as smaller events/meetings at individual Trusts.
- Attendance at relevant Network events.
- Interactions with the NIHR CRN Theme Office and other LCRN subspecialty leads.
- Face-to-face or telephone meetings as required by the NIHR CRN Coordinating Centre Theme office responsible for Neurological Disorders and DeNDRoN. Ad hoc contact with subspecialty leads from all 15 English LCRNs and the devolved nations.
- Interactions with NIHR CRN: Relevant Theme Office
- Occasional emails/telephone calls requesting local clinical intelligence or study feasibility assessment where responses are provided in a timely manner and adhere to the NIHR CRN service offering regarding feasibility and intelligence information.
- Personal participation and education
- Subspecialty Research Leads may themselves be active clinical researchers, contributing to the NIHR CRN portfolio as PIs or co-investigators.
Attendance at one or more relevant national conferences is encouraged.

Other activities will vary according to need. These may include:
Advising the LCRN core team on areas of expertise outside the Subspecialty or for location-specific issues (e.g. at the Lead’s base NHS Trust).
Helping link in with local research infrastructures (AHSN, CTUs, Universities, etc) to develop effective partnerships.
Linking with Subspecialty Research Leads in neighbouring LCRNs to plan cross-LCRN delivery of studies for rare populations or in complex interventions. Subspecialty Research Leads may also support the Specialty/Divisional lead in representing the LCRN at local, regional and national meetings.

Support for Role-holders

Administrative Support. The LCRN will provide administrative support to deliver on this role, e.g. for forming and maintaining contact lists, sending out group emails, arranging educational events/meetings, providing portfolio and recruitment data with analysis along with performance reports.
Travel expenses. LCRN Subspecialty Research Leads will need to travel within the LCRN to maintain links with clinicians and may include the occasional travel to national face-to-face meetings/events. All reasonable travel expenses will be reimbursed/travel tickets booked in advance.

This job description is not intended to be an exhaustive list of duties and it may be reviewed and altered in the light of changed service needs and developments after discussion with the post holder.

Equal Opportunities Policy

It is the aim of the Trust to ensure that no job application or employee receives less favourable treatment on grounds of sex, disability, age sexual orientation, race, colour, nationality or ethnic or national origins or is not placed at disadvantage by conditions or requirements which cannot be shown to be justifiable. To this end, the Trust has an Equal Opportunity Policy and it is for each employee to comply with and contribute to its success.

Data Protection

If required to do so, to obtain, process and/or use information held on computerised or manual records in a fair and lawful way in line with the Data Protection Act 2000. To hold data only for specific purposes and not use or disclose it in any way incompatible with such purpose. To disclose data only to authorised persons or organisations, as instructed.


The Trust is fully committed to encouraging its staff to freely contribute views on all aspects of health service activities, especially those on delivery of care and services to patients.

However, you shall not, either during or after the end of your employment (however it is terminated), divulge to any unauthorised person confidential information relating to the Trust. This includes, but is not limited to, information covering patients, individual staff records, industrial relations, financial affairs, contract terms and prices or business forecasts.

Your obligations of confidentiality under this clause shall not prevent you from raising genuine concerns about healthcare, or a belief that criminal conduct, breach of a legal obligation, health and safety breaches or damage to the environment has been, is being, or is likely to be committed, or any information tending to show any of the above has been, is being, or is likely to be, deliberately concealed, provided that such disclosure is made in good faith and in accordance with the provisions of the Public Interest Disclosure Act 1998 and the Trust's Policy on Raising Concerns at Work-Whistle Blowing Policy, a copy of which is available from the Human Resources Department.