*Full title: SENSE-PARK: Supporting and Empowering Parkinson patients in their home environment using a Novel SEnsory information system that monitors daily-life-relevant parameters of PARKinson disease
The future treatment of Parkinson’s relies on the accurate assessment of how it affects people with Parkinson’s (PwP’s) as individuals. SENSE-PARK is a pioneering project which combines expertise from technology with the experiences of those who live with Parkinson’s and the scientific know-how of those who treat it.
The objective of SENSE-PARK (EU funded, INFSO-ICT-2011-288557) is to develop a patient-centred, minimally obtrusive and empowering information system for use in the home environment, which provides PwP’s with practical and motivating tools to monitor their condition in a continuous and objective way.
In more detail, the SENSE-PARK system will inform the users about motor and non-motor functioning in daily life activities (‘being’, data collection via a wrist-worn data logger), leisure activities (‘belonging’, data collection via gaming console and adapted interface) and scientific environment (‘becoming’, validation purposes).
(i) Participatory approach;
(ii) needs and requirements analysis;
(iii) adapt and develop a PwP’s-friendly interface;
(iv) define relevant parameters to monitor disease progression;
(v) sensor system development and data interpretation;
(vi) hardware and software integration, IT infrastructure and telemedicine;
(vii) iterative testing;
(viii) scenario-based multicentre study.
Through conducting a needs and requirements analysis that was facilitated by Cure Parkinson’s Trust, project the partners were able to define usability criteria and to prioritise symptomatic domains and parameters for measurement of Parkinson’s. The symptomatic domains of the SENSE-PARK system are: Gait, Sleep, Bradykinesia, Cognitive function, Tremor and Sway.
Pilot systems for the measurement of these domains including hardware, software and interface are being developed, used and systematically tested by PwP’s whose feedback will direct modifications and improvements. Validation and relevance of the SENSE-PARK system with respect to the selected domains and parameters have been identified as the key issues for the use by PwP’s as well as for eventual application in PD trials.
Parkinson’s disease (PD) is the second most common neurodegenerative disease, and prevalence increases with age. This leads, in an aging society, to increasing personal, social and economic burden. To date, basically only symptomatic treatment is available, which application almost always leads to the feeling of dependence and lose of self-control in (a) person(s) with PD (PwPs). A further shortcoming in PD-related treatment is the limited quality of disease state-defining parameters. Recent ICT-associated projects have mainly been focusing on the observation of the user rather than giving feedback to him/her, and they bear little resemblance or application to the reality of living with PD. In addition, obtrusive measurements influenced results in particular in PwPs due to disease-caused neural network changes.
At the current time, measurements of PD symptoms are almost all performed in a clinical setting which is artificial and does not reflect the daily life situation. Obviously this situation is artificial and one cannot draw reliable conclusions for daily living situations from results obtained in such an artificial environment. This leads to misinterpretation of symptoms’ occurrence and severity, and consequently to problems with regard to self-awareness of disease state, patient-doctor and patient-caregiver interaction, definition of disease progression, and in choosing the best therapeutic intervention.
SENSE-PARK is supported by the European Union under the 7th Framework Programme for RTD - Grant Agreement INFSO-ICT-2011-288557.
Description of target users and groups
- People with Parkinson's for measurement of their personal disease with respect to detecting patterns and to create personal interpretation of their disease
- Clinicians for getting a more complete picture of the diseases (not only a snapshot) and for better ie pharmacological management of the diseases
- Pharmaceutical industry to use the SENSE-PARK system and parameters for upcoming trials that aim to test disease modifying therapeutic approaches
Description of the way to implement the initiative
Management approaches followed are: participatory approach, shared responsibilities, operational management in work packages, project management, with a strong focus on external and internal communication
The SENSE-PARK work:
- is implemented through a participatory approach in which patients, technological developers, interface specialists and neurologists cooperate on the same footing;
- is based on a needs and requirements analysis of people with Parkinson’s disease (PwP) with which the project started;
- will adapt and develop a PwP-friendly interface on which personal data will be displayed;
- has defined relevant parameters to monitor disease progression for the six symptomatic domains the project initially selected through the needs and requirements analysis;
- includes centrally sensor system development and data interpretation;
- will integrate hardware and software to a running solution which also comprises telemedicine;
- has been tested iteratively by users; and
- will conclude in a scenario-based multicentre study that will run for 16 weeks.
Technology solutionTechnology choice: Proprietary technology, Standards-based technology
Main results, benefits and impacts
Main results by month 24:
- concluded needs and requirements analysis;
- selection of six symptomatic domains for first version of the SENSE-PARK system: gait, dyskinesia/bradykinesia, sway, tremor, sleep, cognitive function;
- parameters to be analysed and displayed determined;
- system hardware and software developed;
- algorithms for 5 of 6 symptomatic domains developed;
- usability test of hardware and software concluded.
Expected final results and their potential impact and use
Besides providing PwP’s with more and better information about their disease, there will be other benefits in developing such a device:
- The disease course-associated parameters which are provided to the user can also be provided to the doctor, to enable an intense and transparent at-the-point discussion between two specialists of the disease.
- The system will enable a more continuous, thorough and objective appraisal of changes during disease course with a far wider and more objective perspective, than clinical evaluation can provide.
- If the SENSE-PARK project can find parameters which are associated with the conditions of the PwP’s, these parameters can eventually be used throughout clinical trials. Measuring this parameter will then show researchers clearly and accurately whether the treatment being tested has had an effect or not.
Return on investmentReturn on investment: Not applicable / Not available
Track record of sharing
Main sharing efforts included to date:
- presentation of the project at the World Parkinson Congress 2013 in Montreal,
- a SENSE-PARK review publication: Maetzler W, Domingos J, Srulijes K, Ferreira JJ, Bloem BR. Quantitative wearable sensors for objective assessment of Parkinson's disease. Mov Disord. 2013 Sep 12. doi: 10.1002/mds.25628. [Epub ahead of print] and
- inclusion of SENSE-PARK into the Cure Parkinson’s Trust “Bridging to a Breakthrough” strategic roadmap towards the development of disease modifying trials.
- A participatory approach can work.
- Home-based, objective, continuous and minimally obtrusive measurement of Parkinson’s disease is a huge asset for people with Parkinson’s, care givers, physicians and the pharma industry.
- Specific communication to target audiences is key.