ArticleJournal of rare diseases (Berlin, Germany)2026
Investigating food-related behaviors in Smith-Magenis syndrome: tailoring a questionnaire for a rare disease.
Article in Journal of rare diseases (Berlin, Germany), 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
1 citing paper in PubMed.
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Purpose: Accurate measurement is essential for tracking changes in clinical outcomes. Individuals with Smith-Magenis syndrome (SMS) exhibit challenging and unique food-related behaviors. We sought to determine the best tool to capture their unique food-related behaviors. Methods: We conducted focus groups with caregivers of individuals with SMS to evaluate two commonly used questionnaires for food-related behaviors- the Food Related Problems Questionnaire (FRPQ) and the Hyperphagia Questionnaire for Clinical Trials (HQ-CT). Based on caregiver input and clinical expertise, we adapted these existing measures into a new tool: the SMS-FRPQ. We then validated this instrument for internal consistency and concurrent validity using online responses from 125 caregivers. Results: Caregivers ( Conclusions: The SMS-FRPQ has 14 items across 3 different factors and 5 additional clinically relevant items. This validated tool may be useful for tracking food-related behavior outcomes in clinical trials for this high-risk population. Supplementary Information: The online version contains supplementary material available at 10.1007/s44162-026-00193-3.
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