A digitally facilitated citizen-science driven approach accelerates participant recruitment and increases study population diversity

Abstract

Academic and industry-driven medical research faces substantial challenges in terms of patient involvement, recruitment, relevance and generalisability. Digital studies and stakeholder engagement may have enormous potential for medical research. But many digital studies are based on limited participant information and/or informed consent and unclear data ownership, and are subject to selection bias, confounding and information bias. The Swiss MS Registry serves as an example of a digitally enhanced, citizen-science study that leverages the advantages of both traditional medical research, with its established research methods, and novel societal and technological developments, while mitigating their ethical and legal disadvantages and risks.

Factors associated with employment and expected work retention among persons with multiple sclerosis: findings of a cross-sectional citizen science study

“…The SMSR is an ongoing, nationwide self-reported registry for PwMS in Switzerland ( n = 2277; status quo: April 06, 2020), initiated by and conducted in close collaboration with the Swiss Multiple Sclerosis Society (SMSS) ( https://www.Clinical-Trials.gov identifier: NCT02980640) [ 25 , 26 ]. This prospective, longitudinal, observational study is based on a citizen-science approach with PwMS representing the core element by being actively involved in relevant aspects, e.g.…”

“…development of questionnaires and discussion of research findings. Details on the study design are described elsewhere [ 25 , 26 ]. The SMSR was approved by the Ethics Committee of the Canton of Zurich (PB-2016-00894; BASEC-NR 2019-01027) and the participants signed a written informed consent after being informed about study procedure and aims in writing.…”

60/30: 60% of the Morbidity-Associated Multiple Sclerosis Disease Burden Comes From the 30% of Persons With Higher Impairments

“…The information is directly obtained from PwMS through online participation or questionnaires on paper and is supplemented by a physician's confirmation of the diagnosis as well as further clinical information for a selected subpopulation. The structure of the SMSR was specifically developed to also include participants who are commonly not included in clinical studies as, for example, persons who were diagnosed recently, are highly disabled or treated by physician that do not actively participate in research (8,9). In this manner, we were able to include the full spectrum of PwMS in Switzerland and minimize underrepresentations in the tails of the age-distribution.…”

“…Furthermore, we added an asymptomatic category based on no mobility impairment and no problems in any of the five domains of the EQ-5D. The group-specific prevalences were obtained by using sex, age and disease severity distributions of the SMSR and by extrapolating the numbers from the 2016 prevalence estimation of Kaufmann et al (5,8,9). The disability weights were used according to the GBD 2016…”

The Swiss Multiple Sclerosis Registry (SMSR): study protocol of a participatory, nationwide registry to promote epidemiological and patient-centered MS research

“…This manuscript describes the main philosophy behind the SMSR and elaborates on the study design, as well as the methods and contents of the data collection. Moreover, a companion paper illustrates how the SMSR merges traditional with novel, internet-driven research approaches to leverage the advantages of both while mitigating legal, ethical, and data security risks [ 7 ].…”