Background: Scientifically valid descriptions of dietary intake at population level are crucial for investigating diet effects on health and disease. Food frequency questionnaires (FFQs) are the most common dietary tools used in large epidemiological studies. Objective: To examine the relative validity of a newly developed FFQ to be used as dietary assessment tool in epidemiological studies. Design: Validity was evaluated by comparing the FFQ and a 4-day weighed food record (4-d FR) at nutrient and food group levels, Spearman’s correlations, Bland–Altman analysis and Wilcoxon rank sum tests were used. Fifty-six participants completed a paper format FFQ and a 4-d FR within 4 weeks. Results: Corrected correlations between the two instruments ranged from 0.27 (carbohydrates) to 0.55 (protein), and at food group level from 0.09 (soup) to 0.92 (alcohol). Nine out of 25 food groups showed correlations > 0.5, indicating moderate validity. More than half the food groups were overestimated in the FFQ, especially vegetables (82.8%) and fruits (56.3%). Water, tea and coffee were underestimated (–14.0%). Conclusions: The FFQ showed moderate relative validity for protein and the food groups fruits, egg, meat, sausage, nuts, salty snacks and beverages. This study supports the use of the FFQ as an acceptable tool for assessing nutrition as a health determinant in large epidemiological studies.

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.

BackgroundMultiple 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.MethodsIn 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.DiscussionThe 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 registrationClinicalTrials.gov NCT02980640; December 6, 2016; retrospectively registered.

BackgroundRecent studies emphasise the importance of timely diagnosis and early initiation of disease-modifying treatment in the long-term prognosis of multiple sclerosis.ObjectivesThe objective of this study was to investigate factors associated with extended time to diagnosis and time to disease-modifying treatment initiation in the Swiss Multiple Sclerosis Registry.MethodsWe used retrospective data (diagnoses 1996–2017) of the survey-based Swiss Multiple Sclerosis Registry and fitted logistic regression models (extended time to diagnosis ≥2 years from first symptoms, extended time to disease-modifying treatment initiation ≥1 year from diagnosis) with demographic and a priori defined variables.ResultsOur study, based on 996 persons with multiple sclerosis, suggests that 40% had an extended time to diagnosis, and extended time to disease-modifying treatment initiation was seen in 23%. Factors associated with extended time to diagnosis were primary progressive multiple sclerosis (odds ratio (OR) 5.09 (3.12–8.49)), diagnosis setting outside of hospital (neurologist (private practice) OR 1.54 (1.16–2.05)) and more uncommon first symptoms (per additional symptom OR 1.17 (1.06–1.30)). Older age at onset (per additional 5 years OR 0.84 (0.78–0.90)) and gait problems (OR 0.65 (0.47–0.89)) or paresthesia (OR 0.72 (0.54–0.95)) as first symptoms were associated with shorter time to diagnosis. Extended time to disease-modifying treatment initiation was associated with older age at diagnosis (per additional 5 years OR 1.18 (1.09–1.29)). In more recent years, time to diagnosis and time to disease-modifying treatment initiation tended to be shorter.ConclusionsEven in recent periods, substantial and partially systematic variation regarding time to diagnosis and time to disease-modifying treatment initiation remains. With the emerging paradigm of early treatment, the residual variation should be monitored carefully.