Press Release by the German Centre for Neurodegenerative Diseases
Bonn/Germany, January 15, 2021 Deutsches Zentrum für Neurodegenerative Erkrankungen e.V. (DZNE, the German Centre for Neurodegenerative Diseases) and Aparito (a Welsh-based med-tech company) today announce their collaboration agreement to co-develop a means for patients to record their own severity of ataxia by using a simplified and shorter SARA version in a video-recordable manner at home.
Prof. Dr. Thomas Klockgether, Director of Clinical Research at the DZNE, was instrumental in the development of the Scale for the Assessment and Rating of Ataxia (SARA) scale as a reliable and valid scale to measure the severity of ataxia, tested in 5 trials including >600 patients with ataxias. It includes eight different domains to measure gait, stance, nose-finger test, finger chase, hand movement and speech which is assessed by clinicians within the hospital.
The DZNE has transferred the SARA into a disease score used by patients outside of hospital settings (“SARAhome”). It includes a reduced number of domains and follows a standardised order and video instruction guide for patients to follow.
Benefits of the collaboration
The collaboration is about the development and further assessment of a new app displaying the SARAhome scale within Aparito’s flagship software platform Atom5™. This way SARAhome is made available to patients on iOS and Android and is currently available in English, German, Dutch and Portuguese. Throughout the cooperation, it will be rolled out in multiple study sites in Europe, including the DZNE in Bonn, and Melbourne Australia over the coming months.
A main benefit of the SARAhome app is that it enables a close monitoring of Ataxia symptoms within a significantly brief period of time: Ataxia symptoms can be highly variable within a single day, from day-to-day and week to week. Travel to clinical sites can be stressful and time-consuming for patients, also impacting on a patient’s performance while being assessed and often leading to missed insight of disease variability.
A recent publication by Dr Marcus Grobe-Einsler et al (2020) in the Journal Movement Disorders demonstrated the validity and feasibility of SARAhome. First data from home application suggests that fluctuations in severity of ataxia exceed the expected range.
“We are highly honoured to enter into this collaborative agreement with DZNE. They are highly regarded for their clinical and academic credibility and we very much look forward to extending the availability of SARAhome to patients globally.”Dr Elin Haf Davies – CEO Aparito
“Our Collaboration with Aparito resulted in the development of a new assessment tool that will be of enormous relevance for future trials and patient care.”Prof. Dr Thomas Klockgether – Director of Clinical Research at the DZNE
German Centre for Neurodegenerative Diseases (DZNE)
The DZNE investigates all aspects of neurodegenerative diseases (such as Alzheimer’s and Parkinson’s diseases and Amyotrophic lateral sclerosis) in order to develop novel approaches of prevention, treatment, and health care. The DZNE is comprised of ten sites across Germany and cooperates closely with universities, university hospitals, and other institutions on a national and international level. The DZNE is a member of the Helmholtz Association. Website: www.dzne.de/en Twitter: @DZNE_de
Guido Enig – DZNE, Communications
E-Mail: firstname.lastname@example.org Tel: +49 228 43302 263
Aparito is a global health tech company that brings clinical trials to patients and unlocks real-world data through mobile apps, video assessments & wearable devices. They provide innovative patient-centric clinical trials solutions that integrate specialist medical & regulatory expertise to capture patient data and develop digital endpoints for hybrid and decentralised clinical trials.
Alexander Guest – Head of Marketing, Aparito
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