Updated systematic-narrative review on communication intervention in Rett Syndrome: 2010–2022

References *Indicates articles included in this review

• *Ainsworth, M. K., Evmenova, A. S., Behrmann, M., & Jerome, M. (2016). Teaching phonics to groups of middle school students with autism, intellectual disabilities, and complex communication needs. Research in Developmental Disabilities, 56, 165–176. doi:10.1016/j.ridd.2016.06.001
   PubMed Web of Science ®Google Scholar
• Amir, R. E., Van den Veyver, I. B., Wan, M., Tran, C. Q., Francke, U., & Zoghbi, H. Y. (1999). Rett syndrome is caused by mutations in X-linked MECP2, encoding methyl-CpG-binding protein 2. Nature Genetics, 23(2), 185–188. doi:10.1038/13810
   PubMed Web of Science ®Google Scholar
• *Bartolotta, T. E., & Remshifski, P. A. (2013). Coaching communication partners: A preliminary investigation of communication intervention during mealtime in Rett syndrome. Communication Disorders Quarterly, 34(3), 162–171. doi:10.1177/1525-740112453165
   Web of Science ®Google Scholar
• Bartolotta, T. E., Zipp, G. P., Simpkins, S. D., & Glazewski, B. (2011). Communication skills in girls with Rett syndrome. Focus on Autism and Other Developmental Disabilities, 26(1), 15–24. doi:10.1177/1088357610380042
   Web of Science ®Google Scholar
• Bondy, A., & Frost, L. (2001). The picture exchange communication system. Behavior Modification, 25(5), 725–744. doi:10.1177/0145445501255004
   PubMed Web of Science ®Google Scholar
• Bruscia, K. E. (1987). Free improvisation model (Alvin Model). In K. E. Bruscia (Ed.), Improvisation models of music therapy (pp. 75–111). Charles C. Thomas.
   Google Scholar
• *Byiers, B. J., Dimian, A., & Symons, F. J. (2014). Functional communication training in Rett syndrome: A preliminary study. American Journal on Intellectual and Developmental Disabilities, 119(4), 340–350. doi:10.1352/1944-7558-119.4.340
   PubMedGoogle Scholar
• Carr, E. G., & Durand, V. M. (1985). Reducing behavior problems through functional communication training. Journal of Applied Behavior Analysis, 18(2), 111–126. doi:10.1901/jaba.1985.18-111
   PubMed Web of Science ®Google Scholar
• *Chou, M.-Y., Chang, N.-W., Chen, C., Lee, W.-T., Hsin, Y.-J., Siu, K.-K., Chen, C.-J., Wang, L.-J., & Hung, P.-L. (2019). The effectiveness of music therapy for individuals with Rett syndrome and their families. Journal of the Formosan Medical Association = Taiwan yi zhi, 118(12), 1633–1643. doi:10.1016/j.jfma.2019.01.001
   PubMed Web of Science ®Google Scholar
• Cianfaglione, R., Clarke, A., Kerr, M., Hastings, R. P., Oliver, C., & Felce, D. (2016). Ageing in Rett syndrome. Journal of Intellectual Disability Research, 60(2), 182–190. doi:10.1111/jir.12238
   PubMed Web of Science ®Google Scholar
• Drasgow, E., Halle, J. W., & Sigafoos, J. (1999). Teaching communication to learners with severe disabilities: Motivation, response competition, and generalization. Australasian Journal of Special Education, 23(1), 47–63. doi:10.1017/S1030011200024507
   Google Scholar
• Du, X., Glass, J. E., Balow, S., Dyer, L. M., Rathbun, P. A., Guan, Q., Liu, J., Wu, Y., Dawson, D. B., Walters-Sen, L., Smolarek, T. A., & Zhang, W. (2022). Genetic testing in patients with neurodevelopmental disorders: Experiences of 511 patients at Cincinnati Children’s Hospital Medical Center. Journal of Autism and Developmental Disorders, 52(11), 4828–4842. doi:10.1007/s10803-021-05337-6
   PubMed Web of Science ®Google Scholar
• Einspieler, C., & Marschik, P. B. (2019). Regression in Rett syndrome: Developmental pathways to its onset. Neuroscience and Biobehavioral Reviews, 98, 320–332. doi:10.1016/j.neubiorev.2019.01.028
   PubMed Web of Science ®Google Scholar
• Eldevik, S., Jahr, E., Eikeseth, S., Hastings, R. P., & Hughes, C. J. (2010). Cognitive and adaptive behavior outcomes of behavioral intervention for young children with intellectual disability. Behavior Modification, 34(1), 16–34. doi:10.1177/0145443509351961
   PubMed Web of Science ®Google Scholar
• Fabio, R. A., Capri, T., & Martino, G. (2020). Understanding Rett syndrome: A guide to symptoms, management and treatment. Routledge.
   Google Scholar
• *Fabio, R. A., Castelli, I., Marchetti, A., & Antonietti, A. (2013). Training communication abilities in Rett syndrome through reading and writing. Frontiers in Psychology, 4, 911. doi:10.3389/f.psyg.2013.00911
   PubMed Web of Science ®Google Scholar
• *Fabio, R. A., Gangemi, A., Capri, T., Budden, S., & Falzone, A. (2018). Neurophysiological and cognitive effects of transcranial direct current stimulation in three girls with Rett syndrome and chronic language impairments. Research in Developmental Disabilities, 76, 76–87. doi:10.1016/j.ridd.2018.03.008
   PubMed Web of Science ®Google Scholar
• *Fabio, R. A., Giannatiempo, S., Semino, M., & Caprì, T. (2021). Longitudinal cognitive rehabilitation applied with eye-tracker for patients with Rett syndrome. Research in Developmental Disabilities, 111, 103891. doi:10.1016/j.ridd.2021.103891
   PubMed Web of Science ®Google Scholar
• *Fabio, R., Gangemi, A., Semino, M., Vignoli, A., Priori, A., Canevini, M., Di Rosa, G., & Caprì, T. (2020). Effects of combined transcranial direct current stimulation with cognitive training in girls with Rett syndrome. Brain Sciences, 10(5), 276. doi:10.3390/brainsci10050276
   PubMed Web of Science ®Google Scholar
• Fehr, S., Bebbington, A., Nassar, N., Downs, J., Ronen, G., De Klerk, M., & Leonard, H. (2011). Trends in the diagnosis of Rett syndrome in Australia. Pediatric Research, 70(3), 313–319. doi:10.1203/PDR.0b013e3182242461
   PubMed Web of Science ®Google Scholar
• Feldman, D., Banerjee, A., & Sur, M. (2016). Developmental dynamics of Rett syndrome. Neural Plasticity, 2016, 6154080. doi:10.1155/2016/6154080
   PubMed Web of Science ®Google Scholar
• Ferreira, M. G., & Teive, H. A. G. (2020). Hand stereotypies in Rett syndrome. Pediatric Neurology Briefs, 34(0), 2. doi:10.15844/pedneurbriefs-34-2
   PubMedGoogle Scholar
• Feuerstein, R., Rand, Y., & Rynders, J. (1988). Don’t accept me as I am: Helping retarded people to excel. University Park Press. 10.1007/978-1-4899-6128-0
   Google Scholar
• Foxe, J. J., Burke, K. M., Andrade, G. N., Djukic, A., Frey, H.-P., & Molholm, S. (2016). Automatic cortical representation of auditory pitch changes in Rett syndrome. Journal of Neurodevelopmental Disorders, 8(1), 34. doi:10.1186/s11689-016-9166-5
   PubMedGoogle Scholar
• *Hackett, S., Morison, C.-J., & Pullen, C. (2013). A retrospective practice-based evaluation of music therapy: A single-case study of a four-year-old girl with Rett syndrome—Rebecca’s story. The Arts in Psychotherapy, 40(5), 473–477. doi:10.1016/j.aip.2013.09.005
   Web of Science ®Google Scholar
• Hagberg, B. (2002). Clinical manifestations and stages of Rett syndrome. Mental Retardation and Developmental Disabilities Research Reviews, 8(2), 61–65. doi:10.1002/mrdd.10020
   PubMedGoogle Scholar
• *Hsieh, Y.-H., Borgestig, M., Gopalarao, D., McGowan, J., Granlund, M., Hwang, A.-W., & Hemmingsson, H. (2021). Communicative interaction with and without eye-gaze technology between children and youths with complex needs and their communication partners. International Journal of Environmental Research and Public Health, 18(10), 5134. doi:10.3390/ijerph18105134
   PubMed Web of Science ®Google Scholar
• Julien, H. M., Parker-McGowan, Q., Byiers, B. J., & Reichle, J. (2015). Adult interpretation of communicative behavior in learners with Rett syndrome. Journal of Developmental and Physical Disabilities, 27(2), 167–182. doi:10.1007/s10882-014-9407-z
   Web of Science ®Google Scholar
• Kiresuk, T., Smith, A., & Cardillo, J. (1994). Goal Attainment Scaling: Applications, theory, and measurement. Lawrence Erlbaum.
   Google Scholar
• Larriba-Quest, K., Byiers, B. J., Beisang, A., Merbler, A. M., & Symons, F. J. (2020). Special education supports and services for Rett syndrome: Parent perceptions and satisfaction. Intellectual and Developmental Disabilities, 58(1), 49–64. doi:10.1352/1934-9556-581.49
   PubMed Web of Science ®Google Scholar
• Light, J., & McNaughton, D. (2009). ALL curriculum guide. Mayer-Johnson.
   Google Scholar
• Light, J., & McNaughton, D. (2011). Supporting the communication, language, and literacy development of children with complex communication needs: State of the science and future research priorities. Assistive Technology : The Official Journal of RESNA, 24(1), 34–44. doi:10.1080/10400435.2011.648717
   PubMed Web of Science ®Google Scholar
• Marschik, P. B., Vollmann, R., Bartl-Pokorny, K. D., Green, V. A., van der Meer, L., Wolin, T., & Einspieler, C. (2014). Developmental profile of speech-language and communication functions in an individual with the preserved speech variant of Rett syndrome. Developmental Neurorehabilitation, 17(4), 284–290. doi:10.3109/17518423.2013.783139
   PubMed Web of Science ®Google Scholar
• Matson, J. L., Dempsey, T., & Wilkins, J. (2008). Rett syndrome in adults with severe intellectual disability: Exploration of behavioral characteristics. European Psychiatry : The Journal of the Association of European Psychiatrists, 23(6), 460–465. doi:10.1016/j.eurpsy.2007.11.008
   PubMed Web of Science ®Google Scholar
• Murad, M. H., Katabi, A., Benkhadra, R., & Montori, V. M. (2018). External validity, generalisability, applicability and directedness: A brief primer. BMJ Evidence-Based Medicine, 23(1), 17–19. doi:10.1136/ebmed-2017-110800
   PubMedGoogle Scholar
• Neul, J. L., Kaufmann, W. E., Glaze, D. G., Christodoulou, J., Clarke, A. J., Bahi-Buisson, N., Leonard, H., Bailey, M. E. S., Schanen, N. C., Zappella, M., Renieri, A., Huppke, P., & Percy, A. K. (2010). Rett syndrome: Revised diagnostic criteria and nomenclature. Annals of Neurology, 68(6), 944–950. doi:10.1002/ana.22124
   PubMed Web of Science ®Google Scholar
• Neul, J. L., Lane, J. B., Lee, H.-S., Geerts, S., Barrish, J. O., Annese, F., Baggett, L. M., Barnes, K., Skinner, S. A., Motil, K. J., Glaze, D. G., Kaufmann, W. E., & Percy, A. K. (2014). Developmental delay in Rett syndrome: Data from the natural history study. Journal of Neurodevelopmental Disorders, 6(1), 20. doi:10.1186/1866-1955-6-20
   PubMed Web of Science ®Google Scholar
• Operto, F. F., Mazza, R., Giovanna Pastorino, G. M., Verrotti, A., & Coppola, G. (2019). Epilepsy and genetics in Rett syndrome: A review. Brain and Behavior, 9(5), e01250. doi:10.1002/brb3.1250
   PubMed Web of Science ®Google Scholar
• Page, M. J., McKenzie, J. E., Bossuyt, P. M., Boutron, I., Hoffmann, T. C., Mulrow, C. D., Shamseer, L., Tetzlaff, J. M., Akl, E. A., Brennan, S. E., Chou, R., Glanville, J., Grimshaw, J. M., Hróbjartsson, A., Lalu, M. M., Li, T., Loder, E. W., Mayo-Wilson, E., McDonald, S., … Moher, D. (2021). The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. BMJ (Clinical Research ed.), 372, n71. doi:10.1136/bmj.n71
   PubMed Web of Science ®Google Scholar
• Partington, J. (2008). The assessment of basic language and learning skills-revised (ABLLS-R): An assessment curriculum guide and skills tracking system for children with autism and other developmental disabilities. Behavior Analysts Inc.
   Google Scholar
• Percy, A. K., & Glaze, D. G. (2017). The natural history of Rett syndrome: Building on recent experience. In W. E. Kaufmann (Ed.), Rett syndrome (pp. 14–23). Mac Keith Press.
   Google Scholar
• Reichle, J., Ganz, J. B., Pierson, L., & Rodriguez, D. (2021). Treatment intensity: Considering persons with autism spectrum disorder and intellectual disability who have complex communication needs. Research and Practice for Persons with Severe Disabilities, 46(3), 146–158. doi:10.1177/15407969211036202
   Web of Science ®Google Scholar
• Reichow, B., Barton, E., Boyd, B., & Hume, K. (2014). Early intensive behavioral intervention (EIBI) for young children with autism spectrum disorders (ASD). Campbell Systematic Reviews, 10(1), 1–116. https://www.campbellcollaboration.org/library/early-intensive-behavioral-intervention-children-autism.html doi:10.4073/csr.2014.9
   Google Scholar
• Reichow, B., George-Puskar, A., Lutz, T., Smith, I. C., & Volkmar, F. R. (2015). Brief report: Systematic review of Rett syndrome in males. Journal of Autism and Developmental Disorders, 45(10), 3377–3383. doi:10.1007/s10803-015-2519-1
   PubMed Web of Science ®Google Scholar
• Sandweiss, A. J., Brandt, V. L., & Zoghbi, H. Y. (2020). Advances in understanding Rett syndrome and MECP2 duplication syndrome: Prospects for future therapies. The Lancet. Neurology, 19(8), 689–698. doi:10.1016/S1474-4422(20)30217-9
   PubMed Web of Science ®Google Scholar
• Sennott, S., Light, J. C., & McNaughton, D. (2016). AAC modeling intervention research review. Research and Practice for Persons with Severe Disabilities, 41(2), 101–115. doi:10.1177/1540796916638822
   Web of Science ®Google Scholar
• Sigafoos, J., Green, V. A., Schlosser, R., O’eilly, M. F., Lancioni, G. E., Rispoli, M., & Lang, R. (2009). Communication intervention in Rett syndrome: A systematic review. Research in Autism Spectrum Disorders, 3(2), 304–318. doi:10.1016/j.rasd.2008.09.006
   Web of Science ®Google Scholar
• Sigafoos, J., Laurie, S., & Pennell, D. (1996). Teaching children with Rett syndrome to request preferred objects using aided communication: Two preliminary studies. Augmentative and Alternative Communication, 12(2), 88–96. doi:10.1080/07434619612331277538
   Google Scholar
• *Simacek, J., Dimian, A. F., & McComas, J. J. (2017). Communication intervention for young children with severe neurodevelopmental disabilities via telehealth. Journal of Autism and Developmental Disorders, 47(3), 744–767. doi:10.1007/s10803-016-3006-z
   PubMed Web of Science ®Google Scholar
• *Simacek, J., Reichle, J., & McComas, J. J. (2016). Communication intervention to teach requesting through aided AAC to two learners with Rett syndrome. Journal of Developmental and Physical Disabilities, 28(1), 59–81. doi:10.1007/s10882-015-9423-7
   PubMed Web of Science ®Google Scholar
• Skjeldal, O. H. (2020). Rett syndrome. In A. El-Baz & J. S. Suri (Eds.), Neurological disorders and imaging physics (vol. 5, pp. 6.1–6.10). IOP Science. doi:10.1088/978-0-7503-2723-7ch6
   Google Scholar
• Smeets, E. E. J., Pelc, K., & Dan, B. (2012). Rett syndrome. Molecular Syndromology, 2(3-5), 113–127. doi:10.1159/000337637
   PubMedGoogle Scholar
• Smith, G. G., Cerham, J. H., & Invik, R. J. (2003). Diagnostic validity. In D. S. Tulsky, D. H. Saklofske, G. J. Chelune, R. K. Heaton, R. J. Invik, R. Bornstein, A. Prifitera, & M. F. Ledbetter (Eds.), Clinical interpretation of the WAIS-III and WMS-III (pp. 273–301). Academic Press. doi:10.1016/B978-012703570-3/50012-2
   Google Scholar
• Smith, T., Klevstrand, M., & Lovaas, O. I. (1995). Behavioral treatment of Rett’s disorder: Ineffectiveness in three cases. American Journal on Mental Retardation, 100(3), 317–322.
   PubMedGoogle Scholar
• Sparrow, S. S., Balla, D. A., & Cicchetti, D. V. (1984). Vineland adaptive behavior scales. American Guidance Service.
   Google Scholar
• Sparrow, S. S., Balla, D. A., & Cicchetti, D. V. (2005). Vineland adaptive behavior scales (Vineland™-II) (2nd ed.). Pearson.
   Google Scholar
• Still, K., Rehfeldt, R. A., Whelan, R., May, R., & Dymond, S. (2014). Facilitating requesting skills using high-tech augmentative and alternative communication devices with individuals with autism spectrum disorders: A systematic review. Research in Autism Spectrum Disorders, 8(9), 1184–1199. doi:10.1016/j.rasd.2014.06.003
   Web of Science ®Google Scholar
• Storey, K. (2022). Systematic instruction of functional skills for students and adults with disabilities (3rd ed.). Charles C. Thomas.
   Google Scholar
• *Stasolla, F., De Pace, C., Damiani, R., Di Leone, A., Albano, V., & Perilli, V. (2014). Comparing PECS and VOCA to promote communication opportunities and to reduce stereotyped behaviors by three girls with Rett syndrome. Research in Autism Spectrum Disorders, 8(10), 1269–1278. doi:10.1016/j.rasd.2014.06.009
   Web of Science ®Google Scholar
• Tarquinio, D. C., & Percy, A. K. (2016). Rett syndrome: Clinical aspects. In C. Sala & C. Vernelli (Eds.), Neuronal and synaptic dysfunction in autism spectrum, disorder and intellectual disability (pp. 301–323). Academic Press. doi:10.1016/B978-0-12-800109-7.00019-4
   Google Scholar
• *Titlestad, K. B., & Eldevik, S. (2019). Brief report: Modest but clinically meaningful effects of early behavioral intervention in twins with Rett syndrome—A case study. Journal of Autism and Developmental Disorders, 49(12), 5063–5072. doi:10.1007/s10803-019-04185-9
   PubMed Web of Science ®Google Scholar
• Van Acker, R., & Grant, S. H. (1995). An effective computer-based requesting system for persons with Rett syndrome. Journal of Childhool Communication Disorders, 16(2), 31–38. doi:10.1177/1525740195016000205
   Google Scholar
• *Vessoyan, K., Steckle, G., Easton, B., Nichols, M., Mok Siu, V., & McDougall, J. (2018). Using eye-tracking technology for communication in Rett syndrome: Perceptions of impact. Augmentative and Alternative Communication (Baltimore, Md. : 1985), 34(3), 230–241. doi:10.1080/07434618.2018.1462848
   PubMed Web of Science ®Google Scholar
• *Wandin, H., Lindberg, P., & Sonnander, K. (2021). Aided language modeling, responsive communication and eye-gaze technology as communication intervention for adults with Rett syndrome: Three experimental single case studies. Disability and Rehabilitation: Assistive Technology, 1–15. doi:10.1080/17483107.2021.1967469
   PubMed Web of Science ®Google Scholar
• Warren, S. F., Fey, M., & Yoder, P. (2007). Differential treatment intensity research: A missing link to creating optimally effective communication interventions. Mental Retardation and Developmental Disabilities Research Reviews, 13(1), 70–77. doi:10.1002/mrdd.20139
   PubMedGoogle Scholar