Rehabilitation supported by technology: Protocol for an international co-creation and user experience study (Preprint)

BACKGROUND Living labs in the health and wellbeing domain have become increasingly common over the past decade but vary in available infrastructure, implemented study designs and outcome measures. Increased transnational collaboration and harmonization can further improve research quality. The Horizon 2020 Project ‘Virtual Health and Wellbeing Living Lab Infrastructure’ (VITALISE) unites 19 partners across 11 countries. VITALISE aims to harmonize Living Lab procedures and open Living Lab Infrastructures to facilitate and promote research activities in the health and wellbeing domain in Europe and beyond. To do so, the VITALISE consortium will conduct joint research activities (JRAs) in the fields included in the care pathway of patients: rehabilitation, transitional care and everyday living environments for the elderly. In line with the expertise of the involved Living Labs, the current protocol will describe the design of the rehabilitation JRA, focusing on the use of innovative technology both for rehabilitation interventions and data collection in a rehabilitation context. OBJECTIVE With this JRA, we primarily aim to gain insight in each Living Lab’s infrastructure and procedures in order to harmonize health and wellbeing Living Lab procedures and infrastructures in Europe and beyond, in particular in the context of rehabilitation. Secondly, we aim to investigate the potential of innovative technologies for rehabilitation through Living Lab methodologies. METHODS The study has a mixed-methods design comprising multiple phases. There are two main phases of data collection, co-creation (phase 1) and small-scale pilots (phase 2), which are preceded by a preliminary harmonization of procedures between the different international Living Labs. An intermediate phase further allows to implement minor adjustments to the intervention or protocol depending on the input that was obtained in the co-creation phase. Six small-scale pilots using innovative technologies for intervention or data collection will be performed across four countries. A third and final phase involves Delphi procedures to reach consensus on harmonized procedures and protocols. RESULTS Phase 1 data collection will begin in March 2022 and phase 2 data collection will begin in June 2022. Results will include output of the co-creation sessions, small-scale pilots and advice on harmonizing procedures and protocols for health and wellbeing Living Labs focusing on rehabilitation. CONCLUSIONS The knowledge gained by the execution of this research will lead to harmonized procedures and protocols in a rehabilitation context for health and wellbeing Living Labs in Europe and beyond. In addition to the harmonized procedures and protocols in rehabilitation, we will also be able to provide new insights for improving implementation of innovative technologies in rehabilitation.

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Group versus individual antenatal and first year postpartum care: Study protocol for a multi-country cluster randomized controlled trial in Kenya and Nigeria

Gates Open Research ◽

10.12688/gatesopenres.12867.2 ◽

2019 ◽

Vol 2 ◽

pp. 56 ◽

Cited By ~ 1

Author(s):

Mark M. Kabue ◽

Lindsay Grenier ◽

Stephanie Suhowatsky ◽

Jaiyeola Oyetunji ◽

Emmanuel Ugwa ◽

...

Keyword(s):

Health Care ◽

Randomized Controlled Trial ◽

Data Collection ◽

Pregnant Women ◽

Controlled Trial ◽

Phase 1 ◽

First Year ◽

Phase 2 ◽

Randomized Controlled ◽

Cluster Randomized

Background: Antenatal care (ANC) in many low- and middle-income countries is under-utilized and of sub-optimal quality. Group ANC (G-ANC) is an intervention designed to improve the experience and provision of ANC for groups of women (cohorts) at similar stages of pregnancy. Methods: A two-arm, two-phase, cluster randomized controlled trial (cRCT) (non-blinded) is being conducted in Kenya and Nigeria. Public health facilities were matched and randomized to either standard individual ANC (control) or G-ANC (intervention) prior to enrollment. Participants include pregnant women attending first ANC at gestational age <24 weeks, health care providers, and sub-national health managers. Enrollment ended in June 2017 for both countries. In the intervention arm, pregnant women are assigned to cohorts at first ANC visit and receive subsequent care together during five meetings facilitated by a health care provider (Phase 1). After birth, the same cohorts meet four times over 12 months with their babies (Phase 2). Data collection was performed through surveys, clinical data extraction, focus group discussions, and in-depth interviews. Phase 1 data collection ended in January 2018 and Phase 2 concludes in November 2018. Intention-to-treat analysis will be used to evaluate primary outcomes for Phases 1 and 2: health facility delivery and use of a modern method of family planning at 12 months postpartum, respectively. Data analysis and reporting of results will be consistent with norms for cRCTs. General estimating equation models that account for clustering will be employed for primary outcome analyzes. Results: Overall 1,075 and 1,013 pregnant women were enrolled in Nigeria and Kenya, respectively. Final study results will be available in February 2019. Conclusions: This is the first cRCT on G-ANC in Africa. It is among the first to examine the effects of continuing group care through the first year postpartum. Registration: Pan African Clinical Trials Registry PACTR201706002254227 May 02, 2017

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Digital Biomarkers for supporting transitional care decisions: Protocol for a transnational feasibility study (Preprint)

10.2196/preprints.34573 ◽

2021 ◽

Author(s):

Despoina Petsani ◽

Sara Ahmed ◽

Vasileia Petronikolou ◽

Eva Kehayia ◽

Mika Alastalo ◽

...

Keyword(s):

Data Collection ◽

Large Scale ◽

Transitional Care ◽

Care Process ◽

Local Context ◽

Pilot Phase ◽

Living Lab ◽

Patient Reported ◽

Living Labs ◽

Digital Biomarkers

BACKGROUND VITALISE is a H2020 project that aims to harmonize Living Lab procedures and facilitate the access to European Health and Wellbeing research infrastructures. In this context, this study presents a joint research activity (JRA) that will be conducted within VITALISE, in transitional care domain, in order to test and validate the harmonized Living Lab procedures and infrastructures. The collection of data from various sources (ICT, clinical and patient reported outcome measures) demonstrated capacity to assess risk and support decision during care transitions but there is no harmonized way of combining this information. OBJECTIVE This study primarily aims to evaluate the feasibility and benefit of collecting multichannel data across Living Labs on the topic of transitional care and to harmonize the data processes and collection. Secondly, we aim to investigate the collection and use of digital biomarkers and explore initial patterns in the data that demonstrate the potential to predict transition outcomes such as readmissions and adverse events. METHODS The current research protocol presents a multi-center, prospective, observational cohort study that will consist of three phases, running consecutively in multiple sites: a co-creation phase, a testing and simulation phase and a transnational pilot phase. The co-creation phase aims to build a common understanding among different sites, investigate the differences of hospitalization discharge management among countries and the willingness of different stakeholders to use technological solutions in the transitional care process. The testing and simulation phase aims to explore ways of integrating observation of a patient’s clinical condition, patient involvement and discharge education in transitional care. The objective of the simulation phase is to evaluate the feasibility and the barriers that are faced by a healthcare professional in assessing transition readiness. The transnational pilot phase takes input from co-creation and testing and stimulation phase. The aim is to pilot the already designed activities from previous phases and collect data to conduct a first predictive analysis. RESULTS The co-creation phase will be completed by April 2022. The testing and simulation phase will begin in September 2022 and will partially overlap with the deployment of the transnational pilot phase that will start the same month. The data collection of the transnational pilots will be finalized by the end of June 2023. Data processing is expected to be completed by March 2024. The results will consist of guidelines and implementation pathway for large scale study and the analysis for identifying initial patterns in the acquired data. CONCLUSIONS The knowledge acquired though this research will lead to harmonized procedures and data collection for Living Labs that support transitions in care. In addition, this research contributes to the increase in capacity to perform Big Data analytics while accounting for each local context and across Living Labs.

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Mathematical Representations in Magazine Advertisements: Have the Messages Changed in a Decade?

Journal of Humanistic Mathematics ◽

10.5642/jhummath.202101.09 ◽

2021 ◽

Vol 11 (1) ◽

pp. 136-165

Author(s):

Jennifer Hall

Keyword(s):

Data Collection ◽

Phase I ◽

Phase 1 ◽

Popular Media ◽

Phase 2 ◽

Negative Stereotypes ◽

Mathematical Representations ◽

Initial Frequency ◽

Popular Magazines ◽

Two Phases

Although people's ideas about mathematics and mathematicians often develop from their school and home experiences, such ideas also are influenced by interactions with popular media. In this article, I report on findings from a study in which I analyzed magazine advertisements for representations of mathematics and mathematicians. Data collection took place in two phases, approximately a decade apart. In each phase, I reviewed a year’s worth of issues in each of six diverse, popular magazines for mathematical representations in advertisements. The frequency of mathematical advertisements decreased from Phase 1 to Phase 2, but the initial frequency was already extremely low, indicating mathematics’ invisibility in popular media. This lack of representation may be due to mathematics not being seen as a “cool” way to sell a product or service since mathematics is linked to many negative stereotypes. The representations were similar in the two phases, with mathematics often depicted in stereotypical ways, such as being difficult or stressful. People rarely featured in the mathematical advertisements, which serves to further dehumanize mathematics. Generally, the findings were consistent with those from studies of other popular media, such as movies and books.

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PSII-5 Carcass characteristics and growth performance of market pigs fed reduced lysine diets in bedded hoop barns

Journal of Animal Science ◽

10.1093/jas/skz122.404 ◽

2019 ◽

Vol 97 (Supplement_2) ◽

pp. 229-230

Author(s):

Peter J Lammers ◽

Chad A Stahl ◽

Mark S Honeyman

Keyword(s):

Growth Performance ◽

Soybean Meal ◽

Large Scale ◽

Phase 1 ◽

Stocking Density ◽

Carcass Characteristics ◽

Small Scale ◽

P Value ◽

Phase 2 ◽

Des Moines

Abstract A 2 × 2 × 2 factorial design was used to compare the effect of SID Lys:ME concentration (current vs. reduced), stocking density (1.30 vs. 4.05 m2/pig), and harvest month (August vs. March) on pigs raised in bedded hoop barns in Western Iowa. For each harvest month, 420 pigs produced from the mating of Duroc boars (Choice Genetics; West Des Moines, IA) to Camborough females (PIC; Hendersonville, TN) were sorted into 12 pens. Six pens were inside 3 large-scale (9.1 × 18.3 m) hoop barns and were stocked with 64 pigs/pen (32 barrows and 32 gilts; 1.30 m2/ pig). Six pens were inside 3 small-scale (6.0 × 10.8 m) hoop barns and were stocked with 6 pigs/pen (3 barrows and 3 gilts; 4.05 m2/pig). Within each stocking density, pens were randomly assigned to 1 of 2 diets which were fed in 2 phases. Corn-soybean meal diets were formulated to deliver 2.94 or 2.34 g SID Lys per Mcal ME in phase 1 (72.6–95.0 kg) and 2.34 or 1.76 g SID Lys per Mcal ME in phase 2 (> 95.0 kg). Pigs were individually weighed every 28 days and feed disappearance was recorded. When pigs in a pen averaged 129.3 kg the entire pen of pigs were harvested. A single chop (last-rib location; 2.54 cm thick) was collected from each carcass to assess pork quality. Pigs harvested in the summer grew faster, more efficiently, and with more intramuscular fat than those harvested in winter (P-value ≤ 0.05) but had lower 10th rib pH (P-value < 0.0001). Pigs allotted 4.05 m2/pig grew more efficiently but had reduced last rib pH as compared to pigs stocked at 1.30 m2/pig (P-value < 0.05). Reducing SID Lys:ME did not impact growth performance or carcass characteristics (P-value > 0.10). Lower concentrations of SID Lys:ME may be adequate for pigs housed in bedded hoop barns but further study is warranted.

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An Intervention for the Transition From Pediatric or Adolescent to Adult-Oriented HIV Care: Protocol for the Development and Pilot Implementation of iTransition

JMIR Research Protocols ◽

10.2196/24565 ◽

2021 ◽

Vol 10 (4) ◽

pp. e24565

Author(s):

Amanda E Tanner ◽

Nadia Dowshen ◽

Morgan M Philbin ◽

Kelly L Rulison ◽

Andres Camacho-Gonzalez ◽

...

Keyword(s):

Data Collection ◽

Social Cognitive ◽

Cognitive Theory ◽

Phase 1 ◽

Hiv Care ◽

Phase 2 ◽

Pilot Implementation ◽

Youth Living With Hiv ◽

Living With Hiv ◽

Implementation Trial

Background In the United States, adolescents and young adults are disproportionately affected by HIV and have poorer HIV-related health outcomes than adults. Health care transition (HCT) from pediatric or adolescent to adult-oriented HIV care is associated with disruptions to youths’ care retention, medication adherence, and viral suppression. However, no evidence-based interventions exist to improve HCT outcomes for youth living with HIV. Objective There are 2 phases of this project. Phase 1 involves the iterative development and usability testing of a Social Cognitive Theory–based mobile health (mHealth) HIV HCT intervention (iTransition). In phase 2, we will conduct a pilot implementation trial to assess iTransition’s feasibility and acceptability and to establish preliminary efficacy among youth and provider participants. Methods The iterative phase 1 development process will involve in-person and virtual meetings and a design team comprising youth living with HIV and health care providers. The design team will both inform the content and provide feedback on the look, feel, and process of the iTransition intervention. In phase 2, we will recruit 100 transition-eligible youth across two clinical sites in Atlanta, Georgia, and Philadelphia, Pennsylvania, to participate in the historical control group (n=50; data collection only) or the intervention group (n=50) in a pilot implementation trial. We will also recruit 28 provider participants across the pediatric or adolescent and adult clinics at the two sites. Data collection will include electronic medical chart abstraction for clinical outcomes as well as surveys and interviews related to demographic and behavioral characteristics; Social Cognitive Theory constructs; and intervention feasibility, acceptability, and use. Analyses will compare historical control and intervention groups in terms of HCT outcomes, including adult care linkage (primary), care retention, and viral suppression (secondary). Interview data will be analyzed using content analysis to understand the experience with use and acceptability. Results Phase 1 (development) of iTransition research activities began in November 2019 and is ongoing. The data collection for the phase 2 pilot implementation trial is expected to be completed in January 2023. Final results are anticipated in summer 2023. Conclusions The development and pilot implementation trial of the iTransition intervention will fill an important gap in understanding the role of mHealth interventions to support HCT outcomes for youth living with HIV. International Registered Report Identifier (IRRID) DERR1-10.2196/24565

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The Effect of Small-Scale Dairy Farming in Enhancing Sustainable Food Security for Farmers and their Households in Murang’a East Sub-County, Murang’a County.

Editon Consortium Journal of Arts, Humanities and Social Studies ◽

10.51317/ecjahss.v2i1.185 ◽

2020 ◽

Vol 2 (1) ◽

pp. 206-211

Author(s):

John Miano Mwangi; Dr Charles N. Mogote

Keyword(s):

Food Security ◽

Data Analysis ◽

Data Collection ◽

Sample Size ◽

Quantitative Research ◽

Dairy Farming ◽

Small Scale ◽

Sustainable Food ◽

Research Activities ◽

Small Scale Dairy

The study sought to investigate the effect of small-scale dairy farming in enhancing sustainable food security for farmers and their households in Murang’a East Sub-County, Murang’a County. The paper applied descriptive research design and quantitative research technique for the methodology. Besides, the investigation used a sample size computed from a populace size of small-scale dairy farmers in Gaturi, Township and Mbiri Wards (lower Kiharu Constituency), Murang’a East Sub-County, approximated to be 45,000 Km2. The sample size comprised of 385 respondents selected through stratified sampling aiming at the equal representation of the three wards. Out of the selected 385 individuals, only 297 respondents were effective participants in the study. The rest did not give feedback or were nonresponsive. The data analysis used descriptive statistics through the Microsoft Excel data analysis tools to develop distribution tables, frequencies, percentages, charts, and measures of central tendency. Data collection instruments included questionnaires, interviews and observation. The study also conducted a pre-test and analysis to ensure validity, accuracy, and reliability of instruments applied. Data collection process involved getting permits and necessary approvals. The study concluded that the study concludes that small-scale dairy farming has an effect in multiple ways on food security within the county. The effect is the provision of milk to the farmers for consumption as food. The study recommends that county government should invest in research activities that would enhance dairy farming practices. Such research activities may include those on the market, diseases, animal feeds, and value addition to dairy produce.

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Supporting youth living with HIV during the transition from pediatric/adolescent- to adult-oriented HIV care: Protocol for development and pilot implementation of iTransition (Preprint)

10.2196/preprints.24565 ◽

2020 ◽

Author(s):

Amanda E. Tanner ◽

Nadia Dowshen ◽

Morgan M Philbin ◽

Kelly L Rulison ◽

Andres Camacho-Gonzalez ◽

...

Keyword(s):

Health Care ◽

Data Collection ◽

Phase 1 ◽

Care Transition ◽

Phase 2 ◽

Health Care Transition ◽

Transition Outcomes ◽

Pilot Implementation ◽

Youth Living With Hiv ◽

Living With Hiv

BACKGROUND In the United States, adolescents and young adults are disproportionately affected by HIV and have poorer HIV-related health outcomes than adults. Health care transition from pediatric/adolescent- to adult-oriented HIV care is associated with disruptions to youths’ care retention, medication adherence, and viral suppression. Yet, no evidence-based interventions exist to improve health care transition outcomes for youth living with HIV. OBJECTIVE There are two phases of this project. Phase 1 involves the iterative development and usability testing of a Social Cognitive Theory-based mHealth (mobile health) HIV health care transition intervention (iTransition). In Phase 2, we will conduct a pilot implementation trial to assess iTransition’s feasibility and acceptability as well as to establish preliminary efficacy among youth and provider participants. METHODS The iterative Phase 1 development process will involve in-person and virtual meetings a Design Team comprised of youth living with HIV and clinic providers. The Design Team will both inform content and provide feedback on the look, feel, and process of the iTransition intervention. In Phase 2, we will recruit 100 transition-eligible youth across two clinical sites in Atlanta, GA and Philadelphia, PA to participate in the historical control group (n=50; data collection only) or the intervention group (n=50) in a pilot implementation trial. We will also recruit 28 provider participants across the pediatric/adolescent and adult clinics in the two sites. Data collection will include, electronic medical chart abstraction for clinical outcomes, and surveys and interviews related to demographic and behavioral characteristics, Social Cognitive Theory constructs, and intervention feasibility, acceptability, and usage. Analyses will compare historical control and intervention groups in terms of health care transition outcomes, including adult care linkage [primary] and care retention and viral suppression [secondary]. RESULTS Phase 1 participant recruitment began in November 2019. Phase 2 data collection is anticipated to end in August 2022. CONCLUSIONS The development and pilot trial of the iTransition intervention will fill an important gap in understanding the role of mHealth interventions to support health care transition outcomes for youth living with HIV. CLINICALTRIAL ClinicalTrials.gov Identifier NCT04383223; https://clinicaltrials.gov/ct2/show/NCT04383223

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The INQUA Loess Commission as a Central European Enterprise

Open Geosciences ◽

10.2478/v10085-009-0046-z ◽

2010 ◽

Vol 2 (1) ◽

Cited By ~ 4

Author(s):

Ian Smalley ◽

Slobodan Markovic ◽

Ken O’Hara-Dhand

Keyword(s):

Central Europe ◽

Phase 1 ◽

Small Scale ◽

Phase 2 ◽

International Union ◽

Phase 3 ◽

Quaternary Period ◽

Central European ◽

History Of ◽

Working Groups

AbstractThe International Union of Quaternary Research (INQUA) organized the study and consideration of the Quaternary Period (the last 2.6 million years in Earth’s history) via a set of commissions, sub-commissions, working groups, projects and programmes. One of the most successful and best records was the Loess Commission (LC) which functioned assub-commission and then commission from 1961 to 2003, resulting in 40 years of useful activity. The history of the LC can be divided into three phases: 1, from 1961–1977 when the President was Julius Fink; 2, from 1977–1991, with President Marton Pecsi; 3, from 1991–2003 with Presidents An Zhi-Sheng and Ian Smalley.Fink, from Vienna, and Pecsi, from Budapest, gave the LC a distinctly Central European aspect. The nature of loess in Central Europe influenced the nature of the LC but the settings for phases 1 and 2 were quite distinct. Phase 1 was a small scale academic operation, carried out in German. As phase 2 began in 1977 the scope expanded and Central Europe became a base for worldwide loess studies. where the LC language changed to English. Phase 2 was run from a National Geographical Institute and demonstrated a different approach to loess research, although the basic programmes of continent-wide mapping and stratigraphy remained the same. The Commission benefited from this change of style and emphasis. In phase 3 the administration moved away from Central Europe but the Finkian ethos remained solid.

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Decentralized wastewater treatment using ‘Pumped Flow Biofilm Reactor’ (PFBR) technology

Water Practice & Technology ◽

10.2166/wpt.2016.011 ◽

2016 ◽

Vol 11 (1) ◽

pp. 93-103 ◽

Cited By ~ 2

Author(s):

Shane Fox ◽

Michael Cahill ◽

Edmond O'Reilly ◽

Eoghan Clifford

Keyword(s):

Wastewater Treatment ◽

Municipal Wastewater ◽

New Technologies ◽

Phase 1 ◽

Oxygen Demand ◽

Biofilm Reactor ◽

Small Scale ◽

Mechanical Equipment ◽

Phase 2 ◽

Sludge Production

Clean water resources are imperative for sustainable development. Thus, protection and management of waters receiving wastewater discharges have received significant attention from policy and regulatory bodies. The quality of wastewater effluent must meet regional (e.g. Water Framework Directive), national and local discharge standards. In addition, there is now significant pressure on engineers and operators to reduce energy consumption, sludge production and operation/maintenance issues, particularly at small-scale and decentralized wastewater facilities. Therefore, significant interest has risen in new technologies and operational insights which can (i) minimize operating costs; (ii) simplify and reduce the use of mechanical equipment; (iii) result in low sludge production; and (iv) ease operation/maintenance. This study investigated the performance of a small-scale municipal wastewater facility over 5 months from commissioning. The facility uses a new biofilm-based technology – the pumped flow biofilm reactor. Two experimental periods Phase 1 (28 to 36 days) and Phase 2 (Days 100 to 146) were examined. During Phase 2, removal rates averaged 98% for 5-day biochemical oxygen demand (BOD5), 93% for total suspended solids, and 94% ammoniacal-nitrogen (NH4-N). Energy requirements averaged 0.22 kWh.m treated−3 and 1.74 kWh.kg-BOD5 removed−1. Extensive, camera-based studies revealed minimal excess sludge in the reactor tanks and sludge removal was not required during the study period. The use of vertically stacked plastic media to support the biofilm may have limited biofilm sloughing. Sludge yield during steady state operation was estimated at around 0.03 g-SS.g-COD removed−1. The study indicates that given careful design and operation, small-scale wastewater treatment systems can be as efficient as much larger, fully manned plants.

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Identification of Factors That Motivate People With Multiple Sclerosis to Participate in Digital Data Collection in Research: Sequential Mixed Methods Study (Preprint)

10.2196/preprints.13295 ◽

2019 ◽

Author(s):

Astrid Karnoe ◽

Lars Kayser ◽

Lasse Skovgaard

Keyword(s):

Multiple Sclerosis ◽

Content Analysis ◽

Mixed Methods ◽

Data Collection ◽

Phase 1 ◽

Mixed Methods Study ◽

Digital Data ◽

Phase 2 ◽

Data Collection Tool ◽

Sequential Mixed Methods

BACKGROUND Digital data collection has the potential to reduce participant burden in research projects that require extensive registrations from participants. To achieve this, a digital data collection tool needs to address potential barriers and motivations for participation. OBJECTIVE This study aimed to identify factors that may affect motivation for participation and adoption of a digital data collection tool in a research project on nutrition and multiple sclerosis (MS). METHODS The study was designed as a sequential mixed methods study with 3 phases. In phase 1, 15 semistructured interviews were conducted in a Danish population of individuals with MS. Interview guide frameworks were based on dimensions from the electronic health literacy framework and the Health Education Impact Questionnaire. Data from phase 1 were analyzed in a content analysis, and findings were used to inform the survey design in phase 2 that validates the results from the content analysis in a larger population. The survey consisted of 14 items, and it was sent to 1000 individuals with MS (response rate 42.5%). In phase 3, participants in 3 focus group interviews discussed how findings from phases 1 and 2 might affect motivation for participation and adoption of the digital tool. RESULTS The following 3 categories related to barriers and incentives for participation were identified in the content analysis of the 15 individual interviews: (1) life with MS, (2) use of technology, and (3) participation and incentives. Phase 1 findings were tested in phase 2’s survey in a larger population (n=1000). The majority of participants were comfortable using smartphone technologies and participated actively on social media platforms. MS symptoms did cause limitations in the use of Web pages and apps when the given pages had screen clutter, too many colors, or too small buttons. Life with MS meant that most participants had to ration their energy levels. Support from family and friends was important to participants, but support could also come in the form of physical aids (walking aids and similar) and digital aids (reminders, calendar functions, and medication management). Factors that could discourage participation were particularly related to the time it would take every day. The biggest motivations for participation were to contribute to research in MS, to learn more about one’s own MS and what affects it, and to be able to exchange experiences with other people with MS. CONCLUSIONS MS causes limitations that put demands on tools developed for digital data collection. A digital data collection tool can increase chances of high adoption rates, but it needs to be supplemented with a clear and simple project design and continuous communication with participants. Motivational factors should be considered in both study design and the development of a digital data collection tool for research.

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