The Cost of Raising Individuals with Fragile X or Chromosome 15 Imprinting Disorders in Australia

Authors: Baker, Emma K., Arora, Sheena, Amor, David J., Date, Perrin, Cross, Meagan, O'Brien, James, Simons, Chloe, Rogers, Carolyn, Goodall, Stephen, Slee, Jennie, Cahir, Chris, Godler, David E.

Source: Journal of Autism and Developmental Disorders. Apr 2023 53(4):1682-1692.

Peer Reviewed: Y

Page Count: 11

Descriptors: Costs, Child Rearing, Genetic Disorders, Severity (of Disability), Foreign Countries, Autism Spectrum Disorders, Predictor Variables

Geographic Terms: Australia

The economic impact of caregiving for individuals with Angelman syndrome in the United States: results from a caregiver survey.

Authors: Jarvis, John, Chertavian, Elizabeth, Buessing, Marric, Renteria, Taylor, Tu, Lufei, Hoffer, Lauren, Fischer, Ryan, Moore, Amanda, Cross, Meagan, Tones, Megan

Source: Orphanet Journal of Rare Diseases; 2/21/2025, Vol. 20 Issue 1, p1-10, 10p

Subject Terms: ECONOMIC impact, ANGELMAN syndrome, MEDICAL care costs, SERVICES for caregivers, QUALITY of life, CAREGIVER education, COST of living

Geographic Terms: UNITED States

Community‐Sourced Reporting of Mortalities in Angelman Syndrome (1979–2022).

Authors: Gomes, Adriana T.¹, Moore, Amanda², Cross, Meagan³, Hardesty, Cristy⁴, David, Kelly⁵, Sampedro, Maria Galan⁶, Dube, Sophie⁷, Weil‐Chalker, Sharon⁸, Montepagano, Adela Gentil⁹, Christel, Ursula¹⁰, Martin, Rachel¹¹, Wheeler, Anne¹², Tan, Wen‐Hann¹³, Bird, Lynne M.¹⁴, Bichell, Terry Jo¹⁵, terryjobichell@combinedbrain.org

Source: American Journal of Medical Genetics. Part A; Apr2025, Vol. 197 Issue 4, p1-9, 9p

A web-based, patient driven registry for Angelman syndrome: the global Angelman syndrome registry

Authors: Napier, Kathryn, Tones, Megan, Simons, Chloe, Heussler, Helen, Hunter, Adam, Cross, Meagan, Bellgard, Matthew

Source: Orphanet journal of rare diseases. 12(1):1-5

Availability: http://explore.bl.uk/primo_library/libweb/action/display.do?tabs=detailsTab&gathStatTab=true&ct=display&fn=search&doc=ETOCvdc_100139988678.0x000001&indx=1&recIds=ETOCvdc_100139988678.0x000001

Does the registry speak your language? A case study of the Global Angelman Syndrome Registry.

Authors: Tones, Megan, Zeps, Nikolajs, Wyborn, Yvette, Smith, Adam, Barrero, Roberto A., Heussler, Helen, Cross, Meagan, McGree, James, Bellgard, Matthew

Source: Orphanet Journal of Rare Diseases; 10/19/2023, Vol. 18 Issue 1, p1-10, 10p

Subject Terms: MEDICAL registries, ANGELMAN syndrome, MACHINE translating, CULTURAL pluralism, ENGLISH language, PATIENT reported outcome measures

Pre-Pregnancy Body Mass Index among Pregnant Adolescents: Gestational Weight Gain and Long-Term Post Partum Weight Retention

Authors: Joseph, Natalie Pierre, Hunkali, Kodjo Bossou, Wilson, Bridget, Morgan, Elisha, Cross, Meagan, Freund, Karen M.

Source: In Journal of Pediatric and Adolescent Gynecology 2008 21(4):195-200

An Overview of the Adaptive Behaviour Profile in Young Children with Angelman Syndrome: Insights from the Global Angelman Syndrome Registry.

Authors: Roche, Laura, Tones, Megan, Cross, Meagan, Bellgard, Mathew, Heussler, Helen

Source: Advances in Neurodevelopmental Disorders; Dec2022, Vol. 6 Issue 4, p442-455, 14p

Caregivers Report on the Pathway to a Formal Diagnosis of Angelman Syndrome: A Comparison Across Genetic Etiologies within the Global Angelman Syndrome Registry.

Authors: Roche, Laura, Tones, Megan, Williams, Mark G., Cross, Meagan, Simons, Chloe, Heussler, Helen

Source: Advances in Neurodevelopmental Disorders; Jun2021, Vol. 5 Issue 2, p193-203, 11p