Inherited Cardiac Risk Register

Fund to support research in the area of Sudden Cardiac Death

The Dr Brian Maurer Memorial Fund will fund an annual €50,000 bursary to
support research in the area of Sudden Cardiac Death with a specific focus on
further understanding the causes, treatment and prevention of Sudden Arrhythmia
Death Syndromes (SADs) and the development of an urgently needed centralised
Inherited Cardiac Risk Register.

At present there is no centrally stored information on the individuals and families in
Ireland affected by these potentially fatal conditions.

The Cardiac Risk Register will save many thousands of lives by early identification
of inherited cardiac conditions and those who are at risk but unaware. It will be

It will be an invaluable resource for doctors and technicians and enable more efficient
treatment of patients and families by making records available to multi-disciplinary
medical teams including adult cardiologists, paediatricians, paediatric cardiologists,
technicians and geneticists.

This Cardiac Risk Register will:

■ facilitate rapid and accurate screening across generations of a family, that will
identify inherited cardiac conditions in up to 30% of family members affected
by sudden cardiac death

■ greatly increase our understanding of inherited cardiac conditions, so helping to
improve the quality of life of affected families

■ allow Ireland to use its advantages as an island nation to further the
the international body of knowledge on the causes of sudden cardiac death and
the search for the responsible gene, and to position our patients in the forefront
of scientific advance

Already, Irish patients are working with scientists to develop stem cell models
of inherited heart disease using Nobel prize-winning technologies based on
preliminary databases collated by dedicated research fellows. We can do so much

We can do so much more with a sophisticated, countrywide register, but a dedicated researcher is essential to the complex task of developing a database that involves sharing of
sensitive information across families.

“The research bursary provided by the Dr Brian Maurer Memorial Fund will
have a catalytic and synergistic effect on all facets of our vision: to provide
cutting-edge clinical care, to advance scientific understanding of sudden
cardiac death, and increase government stakeholder buy-in by generating
hard research facts on the burden of this disease.” — Terry Prendiville, NCRC Principal Investigator and Consultant Paediatric Cardiologist at Our Lady’s Children’s Hospital, Crumlin; and Professor Tim O’Brien of NUI Galway’s Regenerative Medicine Institute (REMEDI)

 

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