HealthE-RND

HealthE-RND is a 3-year pilot project carried out in six European countries: Czech Republic, Germany, Italy, Ireland, the Netherlands and United Kingdom. Our overarching aim is to improve quality of life amongst those of us affected by rare diseases by offering an online eHealth platform. In the initial phase of the project we are focusing on Huntington’s disease families and patients. Learn more.

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PROJECT

HealthE-RND has 3 main parts:

1. HD-Needs

In HD-Needs we are working on developing a questionnaire to measure overall quality of life in people affected by Huntington's disease (HD) and their companions.

2. HD-eHelp

In HD-eHelp we are developing a digital platform. Here, people and families affected by Huntington's disease (HD) will get access to guidance and help online.

3. HD-Proof

In HD-Proof we will measure whether online help is beneficial for people. At this stage, we will evaluate the impact by using our quality of life questionnaire.

SECTIONS

FAMILY & PATIENT EXPERT PANEL (FPEP)​

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We have engaged an expert panel consisting of patients and family members affected by Huntington's disease (HD). The group is participating in the development of the project.
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COORDINATORS

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HealthE-RND is coordinated by a multinational team from Huntington centres and research institutions in six European countries.
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PARTNERS

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HealthE-RND is collaborating with research centres and medical clinics in six European countries which contributes to the development of the eHealth platform.
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WHY?

Rare diseases require specialised medical services. However, there is a lack of resources in many European countries. People affected by rare diseases therefore sometimes have to travel far to get help. By offering online services we might be able to reduce differences in access to help and increase general level of treatment, guidance and care.

We are therefore working with: 1) Developing a questionnaire measuring quality of life amongst those of us affected by rare diseases, and 2) Developing an eHealth platform enabling online guidance.

During the pilot project period of 3 years, we will develop an online platform for Huntington’s disease patients and families. Moreover, we will study whether the eHealth solution is beneficial and improves quality of life.