DEBRA is offering an exciting opportunity for an ambitious, capable, and personable individual with project management and communication skills, to develop and manage a clinical registry for EB (epidermolysis bullosa). This unique opportunity is only one of a few being developed in Ireland and is being funded by the Irish Skin Foundation and DEBRA Ireland, UK and Italy.
The purpose of this role is to coordinate the development, implementation, and maintenance of an International EB Registry to include clinical and genetic information on patients with EB. The Coordinator will act as a central contact point for all activities related to the registry and will work closely with key stakeholders to ensure the needs of clinicians and patients are addressed.
Hours: Part-time contract 2-4 days per week to be reviewed within 1-year anniversary of start date
Reporting to: Research Manager DEBRA Ireland
DEBRA is an ambitious patient-led charity working on behalf of those affected by the genetic skin blistering condition epidermolysis bullosa (EB). The charity ensures that people living with EB have access to the best quality support and medical care, while also driving the development of effective treatments and cures for EB.
MAIN DUTIES AND RESPONSIBILITIES
- Develop and manage an international EB registry.
- Maintain an understanding of other registries and the challenges they encounter.
- Investigate and oversee the best approaches for data storage and security.
- Work with the software development company and other relevant stakeholders to design the EB Registry.
- Draft the relevant documents for data sharing and protection, quality assurance, governance, ethics, consent, and publication etc.
- Assess compatibility, customisation and interoperability of the EB Registry with other patient registries and the potential to link to such registries.
- Coordinate meetings and promote the International EB Registry among clinicians, researchers, industry, and patient organisations to encourage its use.
- Facilitate a process for academic and industry use of the EB Registry in requests for data.
REQUIRED KNOWLEDGE / EXPERIENCE
- A BSc in nursing or another scientific discipline.
- A Masters in research and/or five years’ experience working in clinical trials.
- Highly computer literate and comfortable with technology and social media.
- Experience working in a multidisciplinary setting.
- Experience working with registries and in an international setting desirable.
- Flexibility to travel when required.
Closing date: 8th June 2018
Visit Irish Jobs to apply.
DEBRA Ireland is an equal opportunities employer.
For any additional queries contact firstname.lastname@example.org.