Detailed job description and main responsibilities

Research and development 

·         Assist with or lead (as appropriate) the assessment, development, implementation and evaluation of MND clinical research studies, and the setting of standards of practice.

·         Assist with or lead (as appropriate) plwMND recruitment and day to day management/ organisation of clinical trials and studies, to include: patient assessment, data collection and database management, blood sample collection, monitoring of adverse reactions and compliance.

·         Assist with data entry on to clinical trial database.

·         Have an up to date working knowledge of governing research legislation.

·         Ensure the specific study protocols and procedures are adhered to in accordance with local practice and Good Clinical Practice Guidelines (GCP).

·         Participate in audit programmes and identify areas of potential research relating to the MND. 

·         Identify own developmental needs and establish objectives for personal development.

·         Take part in reflection and appropriate learning from practice, to maintain and develop competence and performance.

·         To maintain an effective working relationship with the MND Association and NIHR Regional Research Delivery Networks by maintaining regular contact with the MND Association Lead Research Nurse.

·         Facilitate education, screening, support, recruitment and retention for clinical trials and research.

Clinical

·         Assume responsibility for the nursing care of research participants.

·         To collect clinical data and to administer functional rating scales and questionnaires to evaluate patients in accordance with study protocols.

·         Assist clinicians in the assessment of the neurological and respiratory functional state in the progression of the clinical trial.

·         Assist or lead (as appropriate) and supervise the scheduled remote collection of patients reported functional measure as specified in the research protocols. 

·         Adhere to organisation wide clinical trial protocols. e.g. manual handling, infection control.

·         To act as contact point (for trial issues) for the participant.

·         Maintain health, safety and security of self and others in own work area through ensuring own and others’ knowledge of relevant local / national policies and procedures, and that these are adhered to.

·         Promote peoples’ equity, diversity and rights, through ensuring that own and others’ practice is in the best interests of patients.

·         Develop own knowledge and expertise within the MND specialty / research field.

·         To collect clinical data and use the appropriate scales to evaluate patients in accordance with trial protocols.

·         To collect blood samples when required from patients, their relatives and volunteers.

·         To work in co-operation with other members of the neurological/neuromuscular disease clinical service and clinical research team

·         Maintain knowledge and up-to-date competency with regards to emergency treatment measures and protocols, e.g. anaphylaxis.

·         Refer to other health professionals when this will improve health outcomes or when risks and needs are beyond own competence and scope of practice.

·         Support patients in the delivery of care and meeting their health and wellbeing needs by providing advice and information, promoting their wishes and beliefs and addressing their concerns.

·         Attend MND clinics and support the MDT

 Management/Education /Leadership

·         Develop effective planning, organising, problem-solving and prioritisation skills.

·         Manage own workload effectively through developing project and time management skills.

·         Negotiate and agree with individuals, groups and other practitioners, outcomes, roles and responsibilities and action to be taken to develop resources, services and facilities.

·         Maintain appropriate channels and styles of communication to meet the needs of patients, relatives and carers, managers, peers and other professions / agencies.

·         Develop and use effective decision-making skills and evaluate the process and results.

·         Responsible and accountable for resource issues directly related to the research studies, as delegated.

·         Liaise with Divisional and related departments (i.e. pharmacy and laboratories) as appropriate.

·         Ensure adequate study supplies are maintained; order further stocks/supplies as required.

·         Participate in a peer network of support, information and learning with others Research Nurses, including the public, patients MND Association Care Centre / Networks and healthcare professionals. 

·         To help the research team in the preparation and submission of research protocols to the relevant ethics committees and R&D committees for approval.

 Communication/administration

·         Provide nursing advice and support to patients participating in research studies and be identifiable as point of contact.

·         Provide advice and support to the multidisciplinary team both internally and externally regarding patients and research studies.

·         Contribute to effective communication between trial centres, sponsors and investigator sites nationally and internationally as required.

·         Promote effective communication with study participants regarding study protocol, patient information sheets and consenting procedures and abide by ICH/GCP research practice.

·         Ensure that appropriate information is disseminated within the specialty, the organisation and within external agencies and forums. 

·         Disseminate study data, research outcomes and specialist knowledge via poster presentations, written publication and other media as appropriate at local, national and international conferences.

 Miscellaneous

·         To carry out any other duties as are within the scope, spirit and purpose of the job, the title of the post and its grading as requested by the line manager or Head of Department/Division. 

·         To understand and adhere to the organisations policies and procedures. 

·         To ensure that the organisations standards are maintained and monitored to improve the quality of care to all those who come in contact with the service provided by the organisation. 

·         Facilitate change to meet the needs of the service.

·         Ensure all documentation relating to participant care is clear, concise and legible and in accordance with NMC ‘Standards for Records and Record Keeping’.

·         Ensure familiarity with risk issues pertaining to confidentiality of participant and research related documentation (Data protection act, Caldicott 1999).

General  

·         To comply with the organisations Equal Opportunities Policy and treat staff, patients, colleagues and potential employees with dignity and respect at all times.

·         To take personal responsibility for promoting a safe environment and safe patient care by identifying areas of risk and following the Incident, Serious Incidents and Near Misses reporting policy and procedure.

·         To take personal responsibility for ensuring that resources are used efficiently and with minimum wastage and to comply with the organisations Standing Financial Instructions (SFIs).

·         To comply with all policies for personal and patient safety and for prevention of healthcare-associated infection (HCAI); this includes a requirement for rigorous and consistent compliance with policies for hand hygiene, use of personal protective equipment and safe disposal of sharps.  

·         To be aware of and adhere to all of the organisations policies and procedures, the Health and Safety at Work Act and the Data Protection Act.

·         To ensure that the highest standards are maintained in the delivery of all aspects of patient care. 

·         To maintain confidentiality at all times.