A rare disease is one which affects less than 1 in 2000 individuals; because there are many such diseases it is estimated that there are 300,000 people living with a rare disease in Ireland. The Rare Disease Clinical Trial Network is an Irish, patient-oriented research network, based within the UCD Clinical Research Centre. This role is shared between the UCD Clinical Research centre and Health Research Charities Ireland (based off Camden Street) and will require attendance at both sites and remote working.

The specific aims of the Rare Disease Clinical Trial Network are
Aim 1) to facilitate and support academic investigators from within and outside Ireland in conducting clinical trials in rare diseases and to establish and augment partnerships with industry to increase rare disease trial conduct in Ireland;
Aim 2) to provide infrastructural support by provision of regulatory documents and establishment/management of a contact list of rare disease patients / stakeholders in Ireland;
Aim 3) to expand the involvement of patients, their families and members of the public in the design and conduct of trials in rare disease;
Aim 4) to educate and train researchers and investigators in rare disease trial conduct and explore/research methodological approaches to rare disease trials in order to optimise recruitment, retention and relevance of research outcomes to patient priorities.
These aims are aligned with those of the UCD Clinical Research Centre to ensure that patients’ voices are at the centre of how we design and carry out clinical trials.

Health Research Charities Ireland (HRCI) is the national umbrella organisation of charities active in health, medical and social care research, together representing over 1 million people in Ireland. Through support and advocacy, they represent their members’ joint interests, to achieve a vision of improved lives through a united community of health research charities. Their strong focus on patient and public involvement (PPI) and on rare diseases will ensure the successful candidate is supported and guided in their role.

The role holder will support PPI in the activities of the RDCTN. They will require excellent people skills, time management and organisational skills, tact and discretion in handling sensitive information and the ability to work in a collegial manner with investigators, staff, patients, their families and carers. They will get to work with enthusiastic teams, in an exciting area, and will be supported and mentored in their role

Fixed Salary: €51,000 per annum

Closing date: 17:00hrs (local Irish time) on 3rd of November 2023

Applications must be submitted by the closing date and time specified. Any applications which are still in progress at the closing time of 17:00hrs (Local Irish Time) on the specified closing date will be cancelled automatically by the system. UCD are unable to accept late applications.

Prior to application, further information (including application procedure) should be obtained from the Work at UCD website: https://www.ucd.ie/workatucd/jobs/

Click on Search jobs for external applicants and insert Ref no – 016568