ArticleJBMR plus2019
Longitudinal Evaluation of Pain, Flare-Up, and Emotional Health in Fibrodysplasia Ossificans Progressiva: Analyses of the International FOP Registry.
Article in JBMR plus, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
19 citing papers in PubMed, 1 synthesis or guideline pooled it, 25 citations in OpenAlex.
- Understanding the clinical morbidity and mortality of fibrodysplasia ossificans progressiva: a systematic literature review.Orphanet journal of rare diseases · 2025Pooled it
- Characterization of flare-ups and impact of garetosmab in adults with fibrodysplasia ossificans progressiva: a post hoc analysis of the randomized, double-blind, placebo-controlled LUMINA-1 trial.Journal of bone and mineral research : the official journal of the American Society for Bone and Mineral Research · 2024Trial
- A Pharmacokinetic, Safety, and Tolerability Trial of Palovarotene in Healthy Japanese and Non-Japanese Participants.European journal of drug metabolism and pharmacokinetics · 2023Trial
- The socioeconomic impacts of fibrodysplasia ossificans progressiva: evidence from a retrospective case-control study in France.JBMR plus · 2026Article
- Intensive, interdisciplinary pain treatment in fibrous dysplasia/McCune-Albright syndrome.JBMR plus · 2026Article
- Content Validation of the Flares Diary: A Qualitative Analysis of the Flares Experience Within the Fibrodysplasia Ossificans Progressiva (FOP) Population.Advances in therapy · 2026Article
- Assessing the economic burden and health-related quality of life in chinese patients with fibrodysplasia ossificans progressiva: a questionnaire survey analysis.Orphanet journal of rare diseases · 2025Article
- Intersections of Fibrodysplasia Ossificans Progressiva and Traumatic Heterotopic Ossification.Biomolecules · 2024Review
- Sex as a Critical Variable in Basic and Pre-Clinical Studies of Fibrodysplasia Ossificans Progressiva.Biomolecules · 2024Article
- The role of miRNA and lncRNA in heterotopic ossification pathogenesis.Stem cell research & therapy · 2022Review
- Diminished muscle integrity in patients with fibrodysplasia ossificans progressiva assessed with at-home electrical impedance myography.Scientific reports · 2022Article
- Social and clinical impact of COVID-19 on patients with fibrodysplasia ossificans progressiva.Orphanet journal of rare diseases · 2022Article
- Monitoring and Management of Fibrodysplasia Ossificans Progressiva: Current Perspectives.Orthopedic research and reviews · 2022Review
- Left to themselves: Time to target chronic pain in childhood rare diseases.Neuroscience and biobehavioral reviews · 2021Review
- Pain Phenotypes in Rare Musculoskeletal and Neuromuscular Diseases.Neuroscience and biobehavioral reviews · 2021Review
- Genomic Context and Mechanisms of theBiomedicines · 2021Review
- Cardiopulmonary and Neurologic Dysfunctions in Fibrodysplasia Ossificans Progressiva.Biomedicines · 2021Review
- Suppressed prefrontal cortex oscillations associate with clinical pain in fibrodysplasia ossificans progressiva.Orphanet journal of rare diseases · 2021Article
- Atypical Clinical Presentation and Diagnostic Difficulties of a Rare Disease: Fibrodysplasia Ossificans Progressiva.Pediatric dermatologyArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 4 institutions in 1 country.
Funding
Abstract
Fibrodysplasia ossificans progressiva (FOP) is an ultra-rare, inherited, connective tissue disease with ∼800 documented cases worldwide. The principal pathological feature of FOP is the transition of skeletal muscle, tendons, ligaments, and fascia into cartilage and bone. This heterotopic ossification (HO) is often preceded by painful soft tissue swellings or flare-ups that may last several months. For many individuals, experiencing a flare-up may represent a worsening of their condition and contribute to feelings of anxiety or suppressed affect, both of which are well-recognized to exacerbate pain perception. To date, much remains unknown regarding the dynamics of pain and emotional health in FOP during flare-up and also quiescent, non-flare-up disease phases. In order to elucidate the occurrence and effect of pain in FOP, this study analyzed Patient-Reported Outcomes Measurement Information System-based questionnaires completed by 99 patients participating in the international FOP Registry over a 30-month period. We observed that although moderate to severe pain (≥4, 0 to 10 pain scale) was commonly associated with flare-ups (56% to 67%), surprisingly, 30% to 55% of patients experienced similar pain levels during non-flare-up states. In those patients reporting pain levels of ≥4, 45% to 74% of patients report experiencing anxiety, depression, or irritability, with 36% to 48% reporting emotional problems during no to mild pain states. Furthermore, independent of the flare-up status, the severity of pain in FOP patients was found to be significantly anti-correlated with emotional health, physical health, and overall quality-of-life. These findings strongly suggest the need for an improved understanding of pain and emotional health in FOP during flare-up and quiescent periods. © 2019 The Authors.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.