Menu
MapConnectionsTopicsBulgariaThe Night (K-TRIO)Marie Skłodowska-CurieFor studentsFor teachersMethodologySurprise me
H2020Staff exchange2018–2023

CareHD · Patient Centered Connected Health Model of Care for Huntingtons Disease

Horizon 2020 — Marie Skłodowska-Curie Actions

Duration
2018-07-01 → 2023-10-31
EU contribution
€828,000
Participants
9
Scheme
MSCA-RISE

Lines connect the coordinator with its partners.

Results in brief

Patient Centered Connected Health Model of Care for Huntingtons Disease

Huntington's Disease (HD) is a monogenetic 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. Connected Health (CH) has the ability to assist with many of the difficulties faced by HD, RD and indeed other symptom related diseases. CH can monitor and identify key intervention points on the disease progression pathway, inform and facilitate integrated care, assist with joining key stakeholders together in a shared ecosystem, assist patients and their families in terms of reducing isolation, optimise self-management and increase empowerment and self actualisation. CH can optimise scarce resources in an over stretched health care system, producing 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 interventions at key points along Huntington’s Disease trajectory. This project is important project because patient centred CH care for HD is under developed. The project aims to develop a new pathway of patient care based on better understanding of technology can assist patients to improve their quality of life at various key points along the care pathway.

Data: CORDIS, © European Union

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.

Original text from CORDIS.

Participants

  • UNIVERSITY COLLEGE DUBLIN, NATIONAL UNIVERSITY OF IRELAND, DUBLIN · DublinCoordinatorIreland
  • COMTRADE PROGRAMSKE RESITVE DOO · LjubljanaSlovenia
  • HUNTINGTON'S DISEASE ASSOCIATION OF IRELAND · DublinIreland
  • ICON CLINICAL RESEARCH · NanterreFrance
  • ICON CLINICAL RESEARCH LIMITED · DublinIreland
  • NATIONAL UNIVERSITY OF IRELAND MAYNOOTH · MaynoothIreland
  • THE SCOTTISH HUNTINGTON S ASSOCIATION · PaisleyUnited Kingdom
  • THE UNIVERSITY OF READING · ReadingUnited Kingdom
  • UNIVERSITY COLLEGE LONDON HOSPITALSNHS FOUNDATION TRUST · LondonUnited Kingdom

Links

Data: CORDIS, © European Union