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CareHD SIGNED

Patient Centered Connected Health Model of Care for Huntingtons Disease

Total Cost €

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EC-Contrib. €

0

Partnership

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Project "CareHD" data sheet

The following table provides information about the project.

Coordinator
UNIVERSITY COLLEGE DUBLIN, NATIONAL UNIVERSITY OF IRELAND, DUBLIN 

Organization address
address: BELFIELD
city: DUBLIN
postcode: 4
website: www.ucd.ie

contact info
title: n.a.
name: n.a.
surname: n.a.
function: n.a.
email: n.a.
telephone: n.a.
fax: n.a.

 Coordinator Country Ireland [IE]
 Total cost 828˙000 €
 EC max contribution 828˙000 € (100%)
 Programme 1. H2020-EU.1.3.3. (Stimulating innovation by means of cross-fertilisation of knowledge)
 Code Call H2020-MSCA-RISE-2017
 Funding Scheme MSCA-RISE
 Starting year 2018
 Duration (year-month-day) from 2018-07-01   to  2022-06-30

 Partnership

Take a look of project's partnership.

# participants  country  role  EC contrib. [€] 
1    UNIVERSITY COLLEGE DUBLIN, NATIONAL UNIVERSITY OF IRELAND, DUBLIN IE (DUBLIN) coordinator 247˙500.00
2    NATIONAL UNIVERSITY OF IRELAND MAYNOOTH IE (Maynooth) participant 121˙500.00
3    THE UNIVERSITY OF READING UK (READING) participant 121˙500.00
4    ICON CLINICAL RESEARCH FR (Nanterre) participant 94˙500.00
5    HUNTINGTON'S DISEASE ASSOCIATION OF IRELAND IE (DUBLIN) participant 81˙000.00
6    COMTRADE PROGRAMSKE RESITVE DOO SI (LJUBLJANA) participant 54˙000.00
7    THE SCOTTISH HUNTINGTON S ASSOCIATION UK (PAISLEY) participant 40˙500.00
8    UNIVERSITY COLLEGE LONDON HOSPITALSNHS FOUNDATION TRUST UK (LONDON) participant 40˙500.00
9    ICON CLINICAL RESEARCH LIMITED IE (DUBLIN) participant 27˙000.00
10    THE UNIVERSITY COURT OF THE UNIVERSITY OF ABERDEEN UK (ABERDEEN) participant 0.00

Map

 Project 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.

 Deliverables

List of deliverables.
Exemplar patient Vignettes Documents, reports 2019-11-22 11:18:22
Ethics and data protection protocol Documents, reports 2019-11-22 11:18:22
Establishment of Integration Working Group Documents, reports 2019-11-22 11:18:22
Care pathway methodology protocol Documents, reports 2019-11-22 11:18:22
Dissemination Advisory Group (DAG) Documents, reports 2019-11-22 11:18:22
Management protocol and project tracker Documents, reports 2019-11-22 11:18:22

Take a look to the deliverables list in detail:  detailed list of CareHD deliverables.

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The information about "CAREHD" are provided by the European Opendata Portal: CORDIS opendata.

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