Some past projects
Thank You for contributing excellent research
We very much enjoyed having you join our team
Declan O'Hare is conducting his research project with Dr Julie McMullan, Ashleen Crowe & Prof AJ McKnight entitled, "Assessing the Impact of Coronavirus (COVID-19) on those affected by rare
This study aims to assess the health, healthcare and psychosocial impact of coronavirus (COVID-19) on patients with rare disease(s) and to evaluate its impact on caregivers during and after the coronavirus (COVID-19) pandemic. Rare diseases are defined by the European Union as those affecting fewer than 1 in 2,000 individuals, cumulatively affecting 1 in every 17 persons at some point in their lives. It is estimated that 350 million people globally have a rare disease.
Coronavirus disease (COVID-19) is an infectious disease caused by a virus [severe respiratory syndrome coronavirus 2 (SARS-COV-2)]. COVID-19 was first identified in patients in Wuhan province in China at the end of 2019. From there the virus has spread to other countries worldwide with the World Health Organisation declaring it a pandemic on 12th March 2020. The number of patients affected, and the death rate, continues to rise. Many countries have now imposed restrictions with many populations having experienced a period of lockdown. Being diagnosed with a rare disease can lead to a significantly reduced lifespan and quality of life for patients and their families; accurate diagnosis and early intervention significantly improves long term outcomes for rare disease patients.
Access to clinical trials, medications, and home care services has been severely curtailed due to COVID-19. Individuals living and working with rare diseases consistently describe challenges accessing accurate information about individual rare diseases and accessing appropriate services; anecdotally this has been exacerbated due to the coronavirus (COVID-19) pandemic. Individuals living with rare conditions often describe feeling ‘isolated’ and ‘dismissed’ so effective communication and provision of information is critical.
This project involves evaluating the impact of the coronavirus (COVID-19) pandemic on patients with rare diseases.