Asbury K, Toseeb U, Barrow N (2024) What do parents of nonverbal and minimally verbal autistic children think about genomic autism research? Autism: Int J Res Pract 28(7):1838–1846. https://doi.org/10.1177/13623613231213431
Ayhan AB, Beyazıt U, Topuz Ş, Tunay ÇZ, Abbas MN, Yılmaz S (2021) Autism spectrum disorder and genetic testing: parents’ attitudes-data from Turkish sample. J Autism Dev Disord 51(9):3331–3340. https://doi.org/10.1007/s10803-020-04798-5
Bailey DB Jr, Skinner D, Sparkman KL (2003) Discovering fragile X syndrome: family experiences and perceptions. Pediatrics 111(2):407–416. https://doi.org/10.1542/peds.111.2.407
Bakula DM, Wetter SE, Peugh JL, Modi AC (2021) A longitudinal assessment of parenting stress in parents of children with new-onset epilepsy. J Pediatr Psychol 46(1):91–99. https://doi.org/10.1093/jpepsy/jsaa091
Bardakjian TM, Helbig I, Quinn C, Elman LB, McCluskey LF, Scherer SS, Gonzalez-Alegre P (2018) Genetic test utilization and diagnostic yield in adult patients with neurological disorders. Neurogenetics 19(2):105–110. https://doi.org/10.1007/s10048-018-0544-x
Chen LS, Xu L, Huang TY, Dhar SU (2013) Autism genetic testing: a qualitative study of awareness, attitudes, and experiences among parents of children with autism spectrum disorders. Genet Medicine: Official J Am Coll Med Genet 15(4):274–281. https://doi.org/10.1038/gim.2012.145
Córdoba M, Rodriguez-Quiroga SA, Vega PA, Salinas V, Perez-Maturo J, Amartino H, Vásquez-Dusefante C, Medina N, González-Morón D, Kauffman MA (2018) Whole exome sequencing in neurogenetic odysseys: an effective, cost- and time-saving diagnostic approach. PLoS ONE 13(2):e0191228. https://doi.org/10.1371/journal.pone.0191228
Article CAS PubMed Central Google Scholar
de Vries BB, van den Ouweland AM, Mohkamsing S, Duivenvoorden HJ, Mol E, Gelsema K, van Rijn M, Halley DJ, Sandkuijl LA, Oostra BA, Tibben A, Niermeijer MF (1997) Screening and diagnosis for the fragile X syndrome among the mentally retarded: an epidemiological and psychological survey. Collaborative fragile X study group. Am J Hum Genet 61(3):660–667. https://doi.org/10.1086/515496
Article PubMed Central Google Scholar
Dermer E, Spahr A, Tran LT, Mirchi A, Pelletier F, Guerrero K, Ahmed S, Brais B, Braverman N, Buhas D, Chandratre S, Chenier S, Chrestian N, Desmeules M, Dilenge ME, Laflamme J, Larbrisseau A, Legault G, Lim KY, Maftei C, Bernard G (2020) Stress in parents of children with genetically determined leukoencephalopathies: a pilot study. J Child Neurol 35(13):901–907. https://doi.org/10.1177/0883073820938645
Even-Zohar Gross N, Geva-Eldar T, Pollak Y, Hirsch HJ, Gross I, Gross-Tsur V (2017) Attitudes toward prenatal genetic testing and therapeutic termination of pregnancy among parents of offspring with Prader-Willi syndrome. Eur J Med Genet 60(4):205–211. https://doi.org/10.1016/j.ejmg.2017.01.003
Johannessen J, Nærland T, Hope S, Torske T, Høyland AL, Strohmaier J, Heiberg A, Rietschel M, Djurovic S, Andreassen OA (2017) Parents’ attitudes toward clinical genetic testing for autism spectrum disorder-data from a Norwegian sample. Int J Mol Sci 18(5):1078. https://doi.org/10.3390/ijms18051078
Article PubMed Central Google Scholar
Kaiyrzhanov R, Salayev K, Ganieva M, Sukhudyan B, Tabatadze N, Guliyeva U, Houlden H (2022a) Whole exome sequencing in 444 families with rare paediatric neurological disorders in central Asia and Transcaucasia. Eur J Neurol 29:164–164
Kaiyrzhanov R, Ganieva M, Salayev K, Guliyeva U, Gulieva S, Shashkin C, Houlden H (2022b) Whole exome sequencing in 62 families with early-onset movement disorders, cerebellar ataxia and hereditary spastic paraplegia from Kazakhstan, Tajikistan, an Azerbaijan. Movement disorders 37:S289–S290
Kanemura H, Sano F, Ohyama T, Sugita K, Aihara M (2016) Seizure severity in children with epilepsy is associated with their parents’ perception of stigma. Epilepsy Behav 63:42–45. https://doi.org/10.1016/j.yebeh.2016.07.028
Kelada L, Wakefield CE, Drew D, Ooi CY, Palmer EE, Bye A, De Marchi S, Jaffe A, Kennedy S (2022) Siblings of young people with chronic illness: caring responsibilities and psychosocial functioning. J Child Health Care: Professionals Working Child Hosp Community 26(4):581–596. https://doi.org/10.1177/13674935211033466
Li M, Zhao SX, Chen WJ, Huang TY, Chen LS (2022) Knowledge and attitudes toward genetic testing for autism spectrum disorders among parents of affected children in Taiwan. Genes 13(2):239. https://doi.org/10.3390/genes13020239
Article CAS PubMed Central Google Scholar
Müller V, Gerdtham U, Alriksson-Schmidt A, Jarl J (2022) Parental decisions to divorce and have additional children among families with children with cerebral palsy: evidence from Swedish longitudinal and administrative data. Health Econ 31(10):2170–2186. https://doi.org/10.1002/hec.4567
Article PubMed Central Google Scholar
Park MS, Chung CY, Lee KM, Sung KH, Choi IH, Kim TW (2012) Parenting stress in parents of children with cerebral palsy and its association with physical function. J Pediatr Orthop B 21(5):452–456. https://doi.org/10.1097/BPB.0b013e32835470c0
Reinhard C, Bachoud-Lévi AC, Bäumer T, Bertini E, Brunelle A, Buizer AI, Federico A, Gasser T, Groeschel S, Hermanns S, Klockgether T, Krägeloh-Mann I, Landwehrmeyer GB, Leber I, Macaya A, Mariotti C, Meissner WG, Molnar MJ, Nonnekes J, Escobar O, Graessner JD, H (2021) The European reference network for rare neurological diseases. Front Neurol 11:616569. https://doi.org/10.3389/fneur.2020.616569
Article PubMed Central Google Scholar
Selkirk CG, McCarthy Veach P, Lian F, Schimmenti L, LeRoy BS (2009) Parents’ perceptions of autism spectrum disorder etiology and recurrence risk and effects of their perceptions on family planning: recommendations for genetic counselors. J Genet Couns 18(5):507–519. https://doi.org/10.1007/s10897-009-9233-0
Zhang Z, Kramer J, Wang H, Chen WJ, Huang TY, Chen YJ, Tseng TS, Chen LS (2021) Attitudes toward pursuing genetic testing among parents of children with autism spectrum disorder in Taiwan: a qualitative investigation. Int J Environ Res Public Health 19(1):118. https://doi.org/10.3390/ijerph19010118
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