Dr Amy Jayne (AJ) McKnight has a keen interest developing excellent research and improving resources for individuals living and working with rare diseases. AJ has worked for rare disease communities for ~40 years, more recently extending this interest into formal research at QUB where we are building an enthusiatic and productive rare disease research team.
For more information on AJ's research click here
Dr McAneney is a Lecturer in the Centre for Public Health. Helen is particularly interested in applying her skills in trial methodology working in the areas of health service research, with a particular focus on rare disease.
For more information on Helen's research click here
Dr Julie McMullan is a post doctoral research fellow carrying out research around communication and education of rare diseases. Julie enjpys meeting the people 'on the ground' and hearing their stories and experiences. Julie is keen that the work she does raises awareness of rare diseases as well as contributing to improving care in Northern Ireland and further afield.
Since joining our team in 2017, Julie has worked on multiple rare disease research projects. In 2018 Julie was shortlisted for the QUB postdoc's 'outstanding engagement' award for her rare disease work; this quote from a rare disease patient says it all, “Julie has boundless energy, rolling her sleeves up and giving her all to help identify and prioritise rare disease actions”.
For more information on Julie's research click here
Dr Laura Smyth completed her PhD with Prof Maxwell and Dr McKnight researching molecular risk factors for chronic kidney disease. As a post doctoral research fellow, Laura is extending her complementary wet-lab and bioinformatic expertise to help identify and better understand molecular risk factors for rare diseases.
For more information on Laura's research click here
Dr Kerry Moore (Longmore) did her PhD with Prof O'Neill & Dr McKnight researching epigenetic risk factors for Parkinson's Disease. For the last few years Kerry has focused her attention towards supporting and improving the lives of individuals living with rare diseases. Kerry works with QUB colleagues and the Northern Ireland Rare Disease Partnership; she is a recipient of the The Rank Foundation's Time to Shine Internship Programme.
For more information on Kerry's research click here
Our PhD students...
Ashleen Crowe is undertaking her PhD with Dr McAneney & Dr McKnight, which is titled, 'Improving communication and identifying priorities for modernising rare disease services with healthcare practitioners, patients, families and advocacy groups'.
We wish Ashleen well as she is currently on maternity leave.
Ashleen's research is currently funded by the Department for the Economy PhD studentship scheme.
For more information on Ashleen's research click here
Katie Kerr (Brown) is undertaking her PhD with Dr McKnight, Dr McAneney & Dr Flanaghan developing effective ‘omic’ strategies for rare disease research and diagnosis in Northern Ireland.
Katie's research is currently funded by a CAST PhD studentship by the Department for the Economy and Belfast Health and Social Care Trust as part of the NI Genomic Medicine Centre project, which is funded by the Department of Health NI and the Medical Research Council.
For more information on Katie's research click here
Caitlin Bailie (Montgomery) is currently undertaking her PhD with Prof Maxwell and Dr McKnight. After taking some time out with her growing family, Caitlin is now extending her molecular expertise to practical rare disease issues.
Caitlin's research is currently funded by the Department for the Economy PhD studentship scheme.
For more information on Caitlin's research click here
Our BSc students...
Kirsten Downes is conducting her research project with Dr Julie McMullan & Dr AJ McKnight entitled, "Caring for someone with a rare disease: An insight into the life of a carer".
This project will explore challenges carers face when looking after someone with a rare disease and identify how they could be better supported in this role. For more information on Kirsten's project please see here.
Jayne Gillis is conducting her research project with Katie Kerr, Laura Smyth, and AJ McKnight entitled, "Multi-omic analyses to improve molecular diagnosis for rare diseases".
A critical challenge for the rare disease community is improving the ‘diagnostic odyssey’; more than five years is the average time to diagnosis with half of patients receiving at least one wrong diagnosis before getting the right one. Many rare diseases have a molecular cause, but better tools are required to enable accurate, efficient diagnosis. This project works with emerging tools to help develop new tools for molecular diagnosis.
Related to our rare disease work, Alex Patterson is working with Cheryl Flanaghan and AJ McKnight researching, "Obesity educational interventions in clinical programmes: a review of current course content and identified gaps".
Previous Staff and Students
- Jane Miller (2017-2019)
- Marc Bentley (2018-2019)
- Taylor McClenaghan (2018-2019)
- Reagan O'Kane (2019)
- Gordon Revolta (2019)
- Catherine Bell (2018)
- Lauren McMullan (2017)
- Nahid Shamandi (2017)