Erk Clinical Coordinator

Overview

Post Title :

Rare Kidney Disease ERN ERKNET Coordinator

ERKNET

(European Reference Network for Rare Kidney Diseases)

Post Status : Permanent

Department :

Transplantation Urology & Nephrology

Location :

Beaumont Hospital, Dublin 9

Reports to :

Directorate Nurse Manager / Directorate Business Manager

Salary :

Appointment will be made on Clinical Coordinator salary scale (€70,698 - €82,040) at a point in line with Government pay policy.

Hours of work :

Full-Time, 35 hours per week

Closing Date :

Wednesday 1st October 2025 @ 12noon

Please note

the hospital reserves the right to close the competition early should a substantial number of applications be received.

Purpose of the role

The Rare Disease ERN ERKNET Care Coordinator will have a central role in the coordination of multidisciplinary rare disease care pathways, patient and family rare disease support, advocacy and education.

In collaboration with the MDT and relevant stakeholders, the post holder will contribute to the delivery of a quality and effective rare disease service and identify service quality improvements through a patient partnership approach.

The Care Coordinator will collaborate and work closely with the National Care Coordinator at the National Rare Diseases Office on (but not limited to) national data reporting requirements and standards and continuous quality improvement.

Reporting Relationship

The Rare Disease ERN ERKNET Care Coordinator will report to the ERN ERKNET Clinical Lead / Co Lead on the rare disease programme of work and to the Directorate Nurse Manager or Directorate Business Manager of the supervising Directorate for operational supervision.

Responsibilities

Patient Care Coordination

Co-ordinate patients' care plans across cross-sectoral specialties and disciplines

Establish and support the development of agreed rare disease referral pathways and processes across both acute and community-based settings

Provide specialist support, information and liaison services to patients / families and carers

Assist in the effective transition from paediatric services to adult services as required

Participate in the development and implementation of rare disease care pathways in collaboration with patient organisations and multidisciplinary stakeholders, and the National Rare Diseases Office (as required)

Actively participate in multidisciplinary team meetings

Contribute to the development of clinical trials in rare kidney disease

ERN ERKNET Coordination and Support

Support the Clinical Lead / Co Lead in the coordination of ERN ERKNET activities

Assist the Clinical Lead / Co Lead in the referral process via the ERN ERKNET Clinical Patient Management System (CPMS), if required

Collaborate with the team on the development and maintenance of a rare disease database and / or registry

Support the implementation of ORPHAcodes, the rare disease coding system

Maintain disease diagnosis on Renal data base

Assist in inherited kidney disease clinic

Contribute to development of undiagnosed registry as it applies to kidney disease

Participate in updating information on Orphanet (European rare disease information database) as relevant to the service

Assist in the consenting of patients and families for rare disease registries

Support the Clinical Lead / Co Lead in the annual ERN ERKNET audit / reporting process

Support the Clinical Lead / Co Lead in the ERN ERKNET 5 yearly evaluation process (AMEQUIS) and compile relevant documentation

Education and Awareness

Contribute to education and promote the awareness of rare diseases and the available treatments and resources with patients and families, healthcare professionals, and relevant external agencies

Develop materials and mechanisms for educating referrers and community-based teams on matters relating to RD presentation, assessment and management

Develop lecture series to educate patients on rare kidney disease

Psychosocial Support

Identify how the service can offer practical and psychosocial support to build the capacity of patients and caregivers to improve quality of life outcomes

Establish and develop links with relevant rare disease patient organisations to develop a patient partnership approach

Quality and Improvement

Commit to adopting a patient partnership approach to ensure patients and families with lived experience of rare diseases inform service developments

Develop relevant SOPs and guidelines as applicable to support the effective operation of the service

In collaboration with the Data Manager, develop and administer KPIs, outcome measures and a process for monitoring quality of care and measuring service impact and performance

Participate in clinical risk management where required and identify areas for improvement

Qualifications

Selection Criteria :

Selection criteria outline the qualifications, skills, knowledge and / or experience that the successful candidate would need to demonstrate for successful discharge of the responsibilities of the post.

Applications will be assessed on the basis of how well candidates satisfy these criteria.

Mandatory :

1. Statutory Registration, Professional Qualifications, Experience, etc

(a) Candidates must at the latest date of application :

(i) Be a Health Care professional with a recognised professional qualification in Therapy or Nursing grade AND

(ii) Be entitled to be so registered on an appropriate professional register e.g. CORU, NMBI or other appropriate clinical / professional register OR

(iii) Be eligible for membership / ( / ) OR

(iv) Health and social care therapy applicants who satisfy the conditions set out in Section 91 of the Health and Social Care Professionals Act 2005, (see note 1below), must submit proof of application for registration with the Registration Board at CORU.

The acceptable proof is correspondence from the Health and Social care Registration Board at CORU confirming their application for registration as a Section 91 applicant.

AND

(v) All candidates must have 5 years full time (or equivalent) years post qualification clinical experience of which 4 years full time are preferably in the renal speciality area (or equivalent) and in a post within the healthcare service, which demonstrates evidence of a management / leadership role in a multidisciplinary / interdisciplinary team.

AND

(vi) Professional Development and Practice : All candidates must demonstrate evidence of continuing professional development relevant in the renal speciality area in the form of post-graduate qualifications or relevant courses.

AND All candidates must demonstrate achievement in the areas of clinical audit, quality improvement initiatives, practice development, teaching and research.

AND All candidates must demonstrate experience of interacting with multiple internal and external stakeholders as relevant to the role.

(b) All candidates must have the requisite clinical, managerial and administrative knowledge and ability (including a high standard of suitability and management ability) for the proper discharge of the responsibilities and duties of this role.

2. Annual Registration

(i) On appointment, practitioners must maintain annual registration on their professional register maintained by CORU or NMBI.

AND

(ii) Practitioners must confirm annual registration with CORU or NMBI to the HSE by way of the annual Patient Safety Assurance Certificate (PSAC).

3. Health

Candidates for and any person holding the office must be fully competent and capable of undertaking the duties attached to the office and be in a state of health such as would indicate a reasonable prospect of ability to render regular and efficient service.

4. Character

Candidates for and any person holding the office must be of good character.

Desirable

• Experience working in a rare disease or specialist care setting
• Recognised postgraduate qualification relevant to role

If an appointee has previously been employed in the Civil or Public Service and that appointee is entitled to or in receipt of a pension from the Civil or Public Service or where a Civil / Public Service pension comes into payment during the appointee's re-employment that pension will be subject to abatement in accordance with Section 52 of the Public Service Pensions (Single Scheme and other Provisions) Act 2012.

Please note : In applying for this position you are acknowledging that you understand that the abatement provisions, where relevant, will apply.

It is not envisaged that the employing Department / Office / Body will support an application for an abatement waiver in respect of appointments to this position

Further Information for Candidates

Supplementary information :

The Hospital

Beaumont Hospital URL :

Management Unit :

Informal Enquiries ONLY to : (No applications will be accepted through these email addresses)

Name :

Jack O\'Shea / Annette Butler

Title :

Business Manager / Directorate Nurse Manager

Email address : #J-18808-Ljbffr