Background: Huntington's disease (HD) is an autosomal dominant neurodegenerative disease that affects the quality of life (QoL) of HD gene expansion carriers (HDGECs) and their partners. Although HD expertise centers have been emerging across Europe, there are still some important barriers to care provision for those affected by this rare disease, including transportation costs, geographic distance of centers, and availability/accessibility of these services in general. eHealth seems promising in overcoming these barriers, yet research on eHealth in HD is limited and fails to use telehealth services specifically designed to fit the perspectives and expectations of HDGECs and their families. In the European HD-eHelp study, we aim to capture the needs and wishes of HDGECs, partners of HDGECs, and health care providers (HCPs) in order to develop a multinational eHealth platform targeting QoL of both HDGECs and partners at home. Methods: We will employ a participatory user-centered design (UCD) approach, which focusses on an in-depth understanding of the end-users' needs and their contexts. Premanifest and manifest adult HDGECs (n = 76), partners of HDGECs (n = 76), and HCPs (n = 76) will be involved as end-users in all three phases of the research and design process: (1) Exploration and mapping of the end-users' needs, experiences and wishes; (2) Development of concepts in collaboration with end-users to ensure desirability; (3) Detailing of final prototype with quick review rounds by end-users to create a positive user-experience. This study will be conducted in the Netherlands, Germany, Czech Republic, Italy, and Ireland to develop and test a multilingual platform that is suitable in different healthcare systems and cultural contexts. Discussion: Following the principles of UCD, an innovative European eHealth platform will be developed that addresses the needs and wishes of HDGECs, partners and HCPs. This allows for high-quality, tailored care to be moved partially into the participants' home, thereby circumventing some barriers in current HD care provision. By actively involving end-users in all design decisions, the platform will be tailored to the end-users' unique requirements, which can be considered pivotal in eHealth services for a disease as complex and rare as HD.

Bloomfield Hospital Trinity College Dublin Dublin Ireland

Department of Clinical Neurosciences Anne Rowling Regenerative Neurology Clinic University of Edinburgh Edinburgh United Kingdom

Department of Neurology and Center of Clinical Neuroscience 1st Faculty of Medicine Charles University and General University Hospital Prague Prague Czechia

Department of Neurology Leiden University Medical Center Leiden Netherlands

Department of Neurology University Hospital Ulm Ulm Germany

Department of Psychiatry Leiden University Medical Center Leiden Netherlands

Department of Public Health and Primary Care Leiden University Medical Center Leiden Netherlands

Huntington and Rare Diseases Unit Fondazione Istituto di Ricovero e Cura a Carattere Scientifico Casa Sollievo della Sofferenza Research Hospital San Giovanni Rotondo Italy

Huntington Center Topaz Overduin Katwijk Netherlands

National eHealth Living Lab Leiden University Medical Center Leiden Netherlands

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Development of the Huntington Support App (HD-eHelp study): a human-centered and co-design approach