Research map: Strengthening adaptive functioning and participation in the contemporary spinal muscular atrophy paradigm: clinical perspectives and future directions

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Papers in this map

  1. Correlation between severity and SMN protein level in spinal muscular atrophy · Suzie Lefebvre · 1997 · 1135 citations · Cited by this paper
  2. Admission blood pressure percentiles and in-hospital mortality in pediatric heart failure: a multicenter retrospective cohort study · 2026 · Related
  3. Diagnosis and management of spinal muscular atrophy: Part 1: Recommendations for diagnosis, rehabilitation, orthopedic and nutritional care · Eugenio Maria Mercuri · 2017 · 1084 citations · Cited by this paper
  4. Screen viewing time from age 1 to 8 years and subsequent academic performance and working memory · 2026 · Related
  5. Diagnosis and management of spinal muscular atrophy: Part 2: Pulmonary and acute care; medications, supplements and immunizations; other organ systems; and ethics · Richard S. Finkel · 2017 · 701 citations · Cited by this paper
  6. Alcohol consumption is prevalent among Chinese adolescents: a national survey · 2025 · Related
  7. Pan-ethnic carrier screening and prenatal diagnosis for spinal muscular atrophy: clinical laboratory analysis of >72 400 specimens · Elaine A. Sugarman · 2011 · 682 citations · Cited by this paper
  8. Prevalence of pediatric cannabidiol prescribing in the United States · 2026 · Related
  9. The ‘F‐words’ in childhood disability: I swear this is how we should think! · Peter Rosenbaum · 2011 · 674 citations · Cited by this paper
  10. Heterogeneity of the prevalence of congenital hip dislocation in Europe · 2026 · Related
  11. The Functional Independence Measure for Children (WeeFIM) · Michael E. Msall · 1994 · 434 citations · Cited by this paper
  12. Prospective associations between media parenting practices and adolescent video game use · 2026 · Related
  13. The role of Environment in the International Classification of Functioning, Disability and Health (ICF) · Marguerite Schneider · 2003 · 341 citations · Cited by this paper
  14. Extreme weather and pediatric respiratory health: insights from GINA 2025 · 2026 · Related
  15. Assessing and Adjusting for Cross-Cultural Validity of Impairment and Activity Limitation Scales Through Differential Item Functioning Within the Framework of the Rasch Model · Alan H. Tennant · 2003 · 293 citations · Cited by this paper
  16. Climate change and thunderstorm asthma in children: challenges and responses · 2026 · Related
  17. 20 Years of ICF—International Classification of Functioning, Disability and Health: Uses and Applications around the World · Matilde Leonardi · 2022 · 237 citations · Cited by this paper
  18. Roots of chronic obstructive pulmonary disease: a pediatric problem with adult consequences · 2026 · Related
  19. Measuring what matters to rare disease patients – reflections on the work by the IRDiRC taskforce on patient-centered outcome measures · Thomas D. Morel · 2017 · 217 citations · Cited by this paper
  20. Seasonal variation in BMI outcomes at 6 months: secondary analyses of a multidisciplinary healthy lifestyle programme for children and adolescents with obesity · 2026 · Related
  21. Spinal Muscular Atrophy: Survival Pattern and Functional Status · Brian Hon Yin Chung · 2004 · 178 citations · Cited by this paper
  22. The PedsQL™ in pediatric patients with Spinal Muscular Atrophy: Feasibility, reliability, and validity of the Pediatric Quality of Life Inventory™ Generic Core Scales and Neuromuscular Module · Susan T. Iannaccone · 2009 · 167 citations · Cited by this paper
  23. Understanding the experiences and needs of individuals with Spinal Muscular Atrophy and their parents: a qualitative study · Ying Qian · 2015 · 153 citations · Cited by this paper
  24. Pathophysiological Insights Derived by Natural History and Motor Function of Spinal Muscular Atrophy · Michelle Anne Farrar · 2012 · 148 citations · Cited by this paper
  25. ACTIVLIM: A Rasch-built measure of activity limitations in children and adults with neuromuscular disorders · Laure Vandervelde · 2007 · 138 citations · Cited by this paper
  26. A qualitative study of perceptions of meaningful change in spinal muscular atrophy · Sarah A. McGraw · 2017 · 122 citations · Cited by this paper
  27. Validity of the EK scale: a functional assessment of non‐ambulatory individuals with Duchenne muscular dystrophy or spinal muscular atrophy · Birgit Fynbo Steffensen · 2001 · 119 citations · Cited by this paper
  28. Patient Reported Impact of Symptoms in Spinal Muscular Atrophy (PRISM-SMA) · Phillip C. Mongiovi · 2018 · 101 citations · Cited by this paper
  29. Two-year efficacy and safety of risdiplam in patients with type 2 or non-ambulant type 3 spinal muscular atrophy (SMA) · Maryam Oskoui · 2023 · 98 citations · Cited by this paper
  30. The International Classification of Functioning, Disability and Health and the version for children and youth as a tool in child habilitation/early childhood intervention – feasibility and usefulness as a common language and frame of reference for practice · Eva Björck‐Åkesson · 2010 · 87 citations · Cited by this paper
  31. Parents as informal caregivers of children and adolescents with spinal muscular atrophy: a systematic review of quantitative and qualitative data on the psychosocial situation, caregiver burden, and family needs · Maja Brandt · 2022 · 82 citations · Cited by this paper
  32. Fatigue leads to gait changes in spinal muscular atrophy · Jacqueline Montes · 2011 · 52 citations · Cited by this paper
  33. A critical review of patient and parent caregiver oriented tools to assess health-related quality of life, activity of daily living and caregiver burden in spinal muscular atrophy · Sonia Messina · 2019 · 47 citations · Cited by this paper
  34. Natural history of Type 1 spinal muscular atrophy: a retrospective, global, multicenter study · Claude Cancés · 2022 · 42 citations · Cited by this paper
  35. Development of the SMA independence scale–upper limb module (SMAIS–ULM): A novel scale for individuals with Type 2 and non-ambulant Type 3 SMA · Dylan Trundell · 2021 · 39 citations · Cited by this paper
  36. Caregiver Burden of Spinal Muscular Atrophy: A Systematic Review · Erik Landfeldt · 2022 · 39 citations · Cited by this paper
  37. Longitudinal developmental profile of newborns and toddlers treated for spinal muscular atrophy · M. Ngawa · 2023 · 31 citations · Cited by this paper
  38. Reliability of telephone administration of the PedsQL™ Generic Quality of Life Inventory™ and Neuromuscular Module™ in spinal muscular atrophy (SMA) · Sally Dunaway · 2010 · 30 citations · Cited by this paper
  39. Rasch analysis of the Pediatric Evaluation of Disability Inventory–computer adaptive test (PEDI‐CAT) item bank for children and young adults with spinal muscular atrophy · Amy E. Pasternak · 2016 · 29 citations · Cited by this paper

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