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Patient Centered Connected Health Model of Care for Huntingtons Disease

Objective

HD is a monogentic disease, meaning modification in a single gene occurring in all cells of the body. In Western countries it is estimated that 5-7 people per 100,000 are affected by HD. Currently there is no cure for the disease and effective management is key to quality of life for those who are affected. Patients and families who are living with the disease face multiple social and self-management issues. For example, stigma of the disease alongside social isolation have been key drivers in terms of high levels of mental health difficulties. CH has the ability to assist with many of the difficulties faced by HD, RD and indeed other symptom related diseases. For example, CH can monitor and identify key intervention points along the disease progression pathway, it can inform and facilitate integrated care, it can assist with joining key stakeholders together in a shared ecosystem, and importantly it can assist patients and their families in terms of reducing isolation, optimising self-management and thus increasing empowerment and self-actualisation. Further, CH has the ability to optimise scarce resources in an over stretched health care system and thus produce effective and efficient outcomes.
The primary aim of this RISE project is to establish an international and inter-sectoral network of organisations working in collaboration on a research project which seeks to design a technology enabled patient centred care pathway which will identify how to optimise Connected Health (CH) interventions at key points along Huntington’s Disease (HD) trajectory.
This is an important project because patient centred care from a CH perspective in the area of HD is currently under developed. This project aims to develop a new pathway of patient care based upon a better understanding of what type of technology can assist patients with improving their quality of life at various key points along the care pathway.

Coordinator

UNIVERSITY COLLEGE DUBLIN, NATIONAL UNIVERSITY OF IRELAND, DUBLIN
Net EU contribution
€ 247 500,00
Address
Belfield
4 Dublin
Ireland

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Region
Ireland Eastern and Midland Dublin
Activity type
Higher or Secondary Education Establishments
Non-EU contribution
€ 0,00

Participants (9)

HUNTINGTON'S DISEASE ASSOCIATION OF IRELAND
Ireland
Net EU contribution
€ 81 000,00
Address
Carmichael House North Brunswick Street
D07 RHA8 Dublin

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Region
Ireland Eastern and Midland Dublin
Activity type
Other
Non-EU contribution
€ 0,00
UNIVERSITY OF ABERDEEN

Participation ended

United Kingdom
Net EU contribution
€ 0,00
Address
King's College Regent Walk
AB24 3FX Aberdeen

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Region
North Eastern Scotland Aberdeen City and Aberdeenshire
Activity type
Higher or Secondary Education Establishments
Non-EU contribution
€ 0,00
THE UNIVERSITY OF READING
United Kingdom
Net EU contribution
€ 121 500,00
Address
Whiteknights Campus Whiteknights House
RG6 6AH Reading

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Region
South East (England) Berkshire, Buckinghamshire and Oxfordshire Berkshire
Activity type
Higher or Secondary Education Establishments
Non-EU contribution
€ 0,00
COMTRADE PROGRAMSKE RESITVE DOO
Slovenia
Net EU contribution
€ 54 000,00
Address
Letaliska Cesta 29b
1000 Ljubljana

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Region
Slovenija Zahodna Slovenija Osrednjeslovenska
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
Non-EU contribution
€ 0,00
ICON CLINICAL RESEARCH LIMITED
Ireland
Net EU contribution
€ 27 000,00
Address
South County Business Park Leopardstown
18 Dublin

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Region
Ireland Eastern and Midland Dublin
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
Non-EU contribution
€ 0,00
ICON CLINICAL RESEARCH
France
Net EU contribution
€ 94 500,00
Address
55, Rue Des Champs Pierreux. Immeuble Le Capitole
92000 Nanterre

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Region
Ile-de-France Ile-de-France Hauts-de-Seine
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
Non-EU contribution
€ 0,00
THE SCOTTISH HUNTINGTON S ASSOCIATION
United Kingdom
Net EU contribution
€ 40 500,00
Address
Business First, Linwood Point Renfrewshire
PA1 2FB Paisley

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SME

The organization defined itself as SME (small and medium-sized enterprise) at the time the Grant Agreement was signed.

Yes
Region
West Central Scotland Inverclyde
Activity type
Other
Non-EU contribution
€ 0,00
NATIONAL UNIVERSITY OF IRELAND MAYNOOTH
Ireland
Net EU contribution
€ 121 500,00
Address
Co Kildare
W23 Maynooth

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Region
Ireland Eastern and Midland Dublin
Activity type
Higher or Secondary Education Establishments
Non-EU contribution
€ 0,00
UNIVERSITY COLLEGE LONDON HOSPITALSNHS FOUNDATION TRUST
United Kingdom
Net EU contribution
€ 40 500,00
Address
Euston Road 250
NW1 2PG London

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Region
London Inner London — West Camden and City of London
Activity type
Research Organisations
Non-EU contribution
€ 0,00