ArticlePediatrics2017
FORWARD: A Registry and Longitudinal Clinical Database to Study Fragile X Syndrome.
Article in Pediatrics, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 38 papers, 1 of them a synthesis that pooled it.
What it found
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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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
38 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Studies assessing domains pertaining to structural language in autism vary in reporting practices and approaches to assessment: A systematic review.Autism : the international journal of research and practice · 2024Pooled it
- Profile of Behavioral Comorbidities in Children With Fragile X Syndrome.Journal of autism and developmental disorders · 2026Article
- Factors associated with social participation among children with fragile X syndrome.Disability and health journal · 2026Article
- Caregiver-perceived behavioral challenges in fragile X syndrome and implications for measuring treatment benefit in clinical trials.Journal of patient-reported outcomes · 2026Article
- Autism Spectrum Disorder Symptom Profiles in Fragile X Syndrome, Angelman Syndrome, Tuberous Sclerosis Complex and Neurofibromatosis Type 1.Journal of autism and developmental disorders · 2026Article
- Characterizing Populations Based on Proximity to a Fragile X Syndrome Specialty Clinic.American journal on intellectual and developmental disabilities · 2026Article
- Blarcamesine improves EEG biomarkers of cortical dysfunction in a mouse model of fragile X syndrome.Frontiers in pharmacology · 2026Article
- Neuropsychiatric research databases for people with intellectual disabilities and epilepsy (REFINE): a feasibility study protocol.BMJ open · 2025Article
- Relationship Between Intellectual Disability and Behavioral Comorbidity in Children With Fragile X Syndrome.Journal of autism and developmental disorders · 2025Article
- The Aberrant Behavior Checklist for Fragile X Syndrome: A Qualitative Clinician Evaluation of Content Validity.Journal of child and adolescent psychopharmacology · 2025Article
- Sensory Symptoms and Signs of Hyperarousal in Individuals with Fragile X Syndrome: Findings from the FORWARD Registry and Database Multisite Study.Journal of autism and developmental disorders · 2024Article
- Latent Class Analysis Identifies Distinctive Behavioral Subtypes in Children with Fragile X Syndrome.Journal of autism and developmental disorders · 2024Article
- Effectiveness of multimodal participant recruitment in SPARK, a large, online longitudinal research study of autism.Journal of clinical and translational science · 2024Article
- Toward Equity in Research on Intellectual and Developmental Disabilities.American journal on intellectual and developmental disabilities · 2023Article
- Phenotypic variability to medication management: an update on fragile X syndrome.Human genomics · 2023Review
- High performing male with fragile X syndrome with an unmethylatedClinical case reports · 2023Article
- GenIDA: an international participatory database to gain knowledge on health issues related to genetic forms of neurodevelopmental disorders.Journal of neural transmission (Vienna, Austria : 1996) · 2023Article
- Clinical findings from the landmark MEF2C-related disorders natural history study.Molecular genetics & genomic medicine · 2022Review
- Sleep problems in fragile X syndrome: Cross-sectional analysis of a large clinic-based cohort.American journal of medical genetics. Part A · 2022Article
- Height and BMI in fragile X syndrome: A longitudinal assessment.Obesity (Silver Spring, Md.) · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors.
Funding
Abstract
BACKGROUND AND
objectiveAdvances in the care of patients with fragile X syndrome (FXS) have been hampered by lack of data. This deficiency has produced fragmentary knowledge regarding the natural history of this condition, healthcare needs, and the effects of the disease on caregivers. To remedy this deficiency, the Fragile X Clinic and Research Consortium was established to facilitate research. Through a collective effort, the Fragile X Clinic and Research Consortium developed the Fragile X Online Registry With Accessible Research Database (FORWARD) to facilitate multisite data collection. This report describes FORWARD and the way it can be used to improve health and quality of life of FXS patients and their relatives and caregivers.
methodsFORWARD collects demographic information on individuals with FXS and their family members (affected and unaffected) through a 1-time registry form. The longitudinal database collects clinician- and parent-reported data on individuals diagnosed with FXS, focused on those who are 0 to 24 years of age, although individuals of any age can participate.
resultsThe registry includes >2300 registrants (data collected September 7, 2009 to August 31, 2014). The longitudinal database includes data on 713 individuals diagnosed with FXS (data collected September 7, 2012 to August 31, 2014). Longitudinal data continue to be collected on enrolled patients along with baseline data on new patients.
conclusionsFORWARD represents the largest resource of clinical and demographic data for the FXS population in the United States. These data can be used to advance our understanding of FXS: the impact of cooccurring conditions, the impact on the day-to-day lives of individuals living with FXS and their families, and short-term and long-term outcomes.
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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.