The Swiss Multiple Sclerosis Registry (SMSR): study protocol of a participatory, nationwide registry to promote epidemiological and patient-centered MS research
Abstract Background Multiple sclerosis (MS) is one of the most frequently observed neurological conditions in Switzerland, but data sources for country-wide epidemiological trend monitoring are lacking. Moreover, while clinical and laboratory MS research are generally well established, there is a ga...
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| Format: | Article |
| Language: | English |
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BMC
2018-08-01
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| Series: | BMC Neurology |
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| Online Access: | http://link.springer.com/article/10.1186/s12883-018-1118-0 |
| _version_ | 1818391038066163712 |
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| author | Nina Steinemann Jens Kuhle Pasquale Calabrese Jürg Kesselring Giulio Disanto Doron Merkler Caroline Pot Vladeta Ajdacic-Gross Stephanie Rodgers Milo Alan Puhan Viktor von Wyl the Swiss Multiple Sclerosis Registry |
| author_facet | Nina Steinemann Jens Kuhle Pasquale Calabrese Jürg Kesselring Giulio Disanto Doron Merkler Caroline Pot Vladeta Ajdacic-Gross Stephanie Rodgers Milo Alan Puhan Viktor von Wyl the Swiss Multiple Sclerosis Registry |
| author_sort | Nina Steinemann |
| collection | DOAJ |
| description | Abstract Background Multiple sclerosis (MS) is one of the most frequently observed neurological conditions in Switzerland, but data sources for country-wide epidemiological trend monitoring are lacking. Moreover, while clinical and laboratory MS research are generally well established, there is a gap in patient-centered MS research to inform care management, or treatment decisions and policy making not only in Switzerland but worldwide. Methods In light of these research gaps, the Swiss Multiple Sclerosis Society initiated and funded the Swiss Multiple Sclerosis Registry (SMSR) an open-ended, longitudinal and prospective, nationwide, patient-centered study. The SMSR recruits adult persons with a suspected or confirmed MS diagnosis who reside or receive care in Switzerland. The SMSR has established a governance structure with clear rules and guidelines. It follows a citizen-science approach with direct involvement of persons with MS (PwMS), who contribute actively to registry development, operations, and research. Main scientific goals entail the study of MS epidemiology in Switzerland, health care access and provision, as well as life circumstances and wellbeing of persons with MS. The innovative study design (“layer model”) offers several participation options with different time commitments. Data collection is by means of regular surveys and medical record abstraction. Survey participation is offered in different modes (web, paper & pencil) and in the three main national languages (German, French, Italian). Participants also receive regular data feedbacks for personal use and self-monitoring, contextualized in the whole population of study participants. Data feedbacks are also used to solicit data corrections of key variables from participants. Discussion The SMSR combines the advantages of traditional and novel research methods in medical research and has recruited over 1600 PwMS in its first year. The future-oriented design and technology will enable a response not only to future technological innovations and research trends, but also to challenges in health care provision for MS. Trial registration ClinicalTrials.gov NCT02980640; December 6, 2016; retrospectively registered. |
| first_indexed | 2024-12-14T05:07:10Z |
| format | Article |
| id | doaj.art-422f0e34039d4c4e956bdfbb95f705e0 |
| institution | Directory Open Access Journal |
| issn | 1471-2377 |
| language | English |
| last_indexed | 2024-12-14T05:07:10Z |
| publishDate | 2018-08-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Neurology |
| spelling | doaj.art-422f0e34039d4c4e956bdfbb95f705e02022-12-21T23:16:04ZengBMCBMC Neurology1471-23772018-08-0118111010.1186/s12883-018-1118-0The Swiss Multiple Sclerosis Registry (SMSR): study protocol of a participatory, nationwide registry to promote epidemiological and patient-centered MS researchNina Steinemann0Jens Kuhle1Pasquale Calabrese2Jürg Kesselring3Giulio Disanto4Doron Merkler5Caroline Pot6Vladeta Ajdacic-Gross7Stephanie Rodgers8Milo Alan Puhan9Viktor von Wyl10the Swiss Multiple Sclerosis RegistryEpidemiology, Biostatistics and Prevention Institute, University of ZurichNeurological Policlinic, University Hospital BaselDepartment of Psychology, University of BaselRehabilitation Clinic ValensDepartment of Neurology, Regional Hospital Lugano (EOC)Division of Clinical Pathology, Geneva University HospitalDepartment of Clinical Neuroscience, Centre hospitalier universitaire vaudoisEpidemiology, Biostatistics and Prevention Institute, University of ZurichEpidemiology, Biostatistics and Prevention Institute, University of ZurichEpidemiology, Biostatistics and Prevention Institute, University of ZurichEpidemiology, Biostatistics and Prevention Institute, University of ZurichAbstract Background Multiple sclerosis (MS) is one of the most frequently observed neurological conditions in Switzerland, but data sources for country-wide epidemiological trend monitoring are lacking. Moreover, while clinical and laboratory MS research are generally well established, there is a gap in patient-centered MS research to inform care management, or treatment decisions and policy making not only in Switzerland but worldwide. Methods In light of these research gaps, the Swiss Multiple Sclerosis Society initiated and funded the Swiss Multiple Sclerosis Registry (SMSR) an open-ended, longitudinal and prospective, nationwide, patient-centered study. The SMSR recruits adult persons with a suspected or confirmed MS diagnosis who reside or receive care in Switzerland. The SMSR has established a governance structure with clear rules and guidelines. It follows a citizen-science approach with direct involvement of persons with MS (PwMS), who contribute actively to registry development, operations, and research. Main scientific goals entail the study of MS epidemiology in Switzerland, health care access and provision, as well as life circumstances and wellbeing of persons with MS. The innovative study design (“layer model”) offers several participation options with different time commitments. Data collection is by means of regular surveys and medical record abstraction. Survey participation is offered in different modes (web, paper & pencil) and in the three main national languages (German, French, Italian). Participants also receive regular data feedbacks for personal use and self-monitoring, contextualized in the whole population of study participants. Data feedbacks are also used to solicit data corrections of key variables from participants. Discussion The SMSR combines the advantages of traditional and novel research methods in medical research and has recruited over 1600 PwMS in its first year. The future-oriented design and technology will enable a response not only to future technological innovations and research trends, but also to challenges in health care provision for MS. Trial registration ClinicalTrials.gov NCT02980640; December 6, 2016; retrospectively registered.http://link.springer.com/article/10.1186/s12883-018-1118-0Multiple sclerosisHealth-related quality of lifeEpidemiologySwitzerlandPatient-reported outcomes |
| spellingShingle | Nina Steinemann Jens Kuhle Pasquale Calabrese Jürg Kesselring Giulio Disanto Doron Merkler Caroline Pot Vladeta Ajdacic-Gross Stephanie Rodgers Milo Alan Puhan Viktor von Wyl the Swiss Multiple Sclerosis Registry The Swiss Multiple Sclerosis Registry (SMSR): study protocol of a participatory, nationwide registry to promote epidemiological and patient-centered MS research BMC Neurology Multiple sclerosis Health-related quality of life Epidemiology Switzerland Patient-reported outcomes |
| title | The Swiss Multiple Sclerosis Registry (SMSR): study protocol of a participatory, nationwide registry to promote epidemiological and patient-centered MS research |
| title_full | The Swiss Multiple Sclerosis Registry (SMSR): study protocol of a participatory, nationwide registry to promote epidemiological and patient-centered MS research |
| title_fullStr | The Swiss Multiple Sclerosis Registry (SMSR): study protocol of a participatory, nationwide registry to promote epidemiological and patient-centered MS research |
| title_full_unstemmed | The Swiss Multiple Sclerosis Registry (SMSR): study protocol of a participatory, nationwide registry to promote epidemiological and patient-centered MS research |
| title_short | The Swiss Multiple Sclerosis Registry (SMSR): study protocol of a participatory, nationwide registry to promote epidemiological and patient-centered MS research |
| title_sort | swiss multiple sclerosis registry smsr study protocol of a participatory nationwide registry to promote epidemiological and patient centered ms research |
| topic | Multiple sclerosis Health-related quality of life Epidemiology Switzerland Patient-reported outcomes |
| url | http://link.springer.com/article/10.1186/s12883-018-1118-0 |
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