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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.

Call for proposal

H2020-MSCA-RISE-2017
See other projects for this call

Funding Scheme

MSCA-RISE - Marie Skłodowska-Curie Research and Innovation Staff Exchange (RISE)

Coordinator

UNIVERSITY COLLEGE DUBLIN, NATIONAL UNIVERSITY OF IRELAND, DUBLIN
Address
Belfield
4 Dublin
Ireland
Activity type
Higher or Secondary Education Establishments
EU contribution
€ 247 500

Participants (9)

HUNTINGTON'S DISEASE ASSOCIATION OF IRELAND
Ireland
EU contribution
€ 81 000
Address
Carmichael House North Brunswick Street
D07 RHA8 Dublin
Activity type
Other
THE UNIVERSITY COURT OF THE UNIVERSITY OF ABERDEEN

Participation ended

United Kingdom
EU contribution
€ 0
Address
King's College Regent Walk
AB24 3FX Aberdeen
Activity type
Higher or Secondary Education Establishments
THE UNIVERSITY OF READING
United Kingdom
EU contribution
€ 121 500
Address
Whiteknights Campus Whiteknights House
RG6 6AH Reading
Activity type
Higher or Secondary Education Establishments
COMTRADE PROGRAMSKE RESITVE DOO
Slovenia
EU contribution
€ 54 000
Address
Letaliska Cesta 29B
1000 Ljubljana
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
ICON CLINICAL RESEARCH LIMITED
Ireland
EU contribution
€ 27 000
Address
South County Business Park Leopardstown
18 Dublin
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
ICON CLINICAL RESEARCH
France
EU contribution
€ 94 500
Address
55, Rue Des Champs Pierreux. Immeuble Le Capitole
92000 Nanterre
Activity type
Private for-profit entities (excluding Higher or Secondary Education Establishments)
THE SCOTTISH HUNTINGTON S ASSOCIATION
United Kingdom
EU contribution
€ 40 500
Address
Business First, Linwood Point Renfrewshire
PA1 2FB Paisley
Activity type
Other
NATIONAL UNIVERSITY OF IRELAND MAYNOOTH
Ireland
EU contribution
€ 121 500
Address
Co Kildare
W23 Maynooth
Activity type
Higher or Secondary Education Establishments
UNIVERSITY COLLEGE LONDON HOSPITALSNHS FOUNDATION TRUST
United Kingdom
EU contribution
€ 40 500
Address
Euston Road 250
NW1 2PG London
Activity type
Research Organisations