{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,10,29]],"date-time":"2025-10-29T09:59:43Z","timestamp":1761731983462,"version":"build-2065373602"},"reference-count":21,"publisher":"Springer Science and Business Media LLC","issue":"6","license":[{"start":{"date-parts":[[2025,7,4]],"date-time":"2025-07-04T00:00:00Z","timestamp":1751587200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.springernature.com\/gp\/researchers\/text-and-data-mining"},{"start":{"date-parts":[[2025,7,4]],"date-time":"2025-07-04T00:00:00Z","timestamp":1751587200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/www.springernature.com\/gp\/researchers\/text-and-data-mining"}],"funder":[{"name":"Fogarty International Center \/ National Institutes of Health: International Bioethics Research Postdoctoral Training - C. Asia Network","award":["D43TW011237","D43TW011237","D43TW011237","D43TW011237","D43TW011237"],"award-info":[{"award-number":["D43TW011237","D43TW011237","D43TW011237","D43TW011237","D43TW011237"]}]},{"DOI":"10.13039\/100010269","name":"Wellcome Trust","doi-asserted-by":"publisher","award":["WT093205MA, WT104033AIA","WT093205MA, WT104033AIA"],"award-info":[{"award-number":["WT093205MA, WT104033AIA","WT093205MA, WT104033AIA"]}],"id":[{"id":"10.13039\/100010269","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["J Community Genet"],"DOI":"10.1007\/s12687-025-00815-1","type":"journal-article","created":{"date-parts":[[2025,7,4]],"date-time":"2025-07-04T05:05:33Z","timestamp":1751605533000},"page":"759-767","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Attitudes of parents of children with rare neurological disorders towards clinical genetic testing"],"prefix":"10.1007","volume":"16","author":[{"given":"Kamran","family":"Salayev","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ulviyya","family":"Guliyeva","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sugra","family":"Guliyeva","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rauan","family":"Kaiyrzhanov","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ulviyya","family":"Aslanova","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Narmin","family":"Hajiyeva","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Henry","family":"Houlden","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kerim","family":"Munir","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2025,7,4]]},"reference":[{"key":"815_CR1","doi-asserted-by":"publisher","DOI":"10.1177\/13623613231213431","author":"K Asbury","year":"2024","unstructured":"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\u20131846. https:\/\/doi.org\/10.1177\/13623613231213431"},{"issue":"9","key":"815_CR2","doi-asserted-by":"publisher","first-page":"3331","DOI":"10.1007\/s10803-020-04798-5","volume":"51","author":"AB Ayhan","year":"2021","unstructured":"Ayhan AB, Beyaz\u0131t U, Topuz \u015e, Tunay \u00c7Z, Abbas MN, Y\u0131lmaz S (2021) Autism spectrum disorder and genetic testing: parents\u2019 attitudes-data from Turkish sample. J Autism Dev Disord 51(9):3331\u20133340. https:\/\/doi.org\/10.1007\/s10803-020-04798-5","journal-title":"J Autism Dev Disord"},{"issue":"2","key":"815_CR3","doi-asserted-by":"publisher","first-page":"407","DOI":"10.1542\/peds.111.2.407","volume":"111","author":"DB Bailey Jr","year":"2003","unstructured":"Bailey DB Jr, Skinner D, Sparkman KL (2003) Discovering fragile X syndrome: family experiences and perceptions. Pediatrics 111(2):407\u2013416. https:\/\/doi.org\/10.1542\/peds.111.2.407","journal-title":"Pediatrics"},{"issue":"1","key":"815_CR4","doi-asserted-by":"publisher","first-page":"91","DOI":"10.1093\/jpepsy\/jsaa091","volume":"46","author":"DM Bakula","year":"2021","unstructured":"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\u201399. https:\/\/doi.org\/10.1093\/jpepsy\/jsaa091","journal-title":"J Pediatr Psychol"},{"issue":"2","key":"815_CR5","doi-asserted-by":"publisher","first-page":"105","DOI":"10.1007\/s10048-018-0544-x","volume":"19","author":"TM Bardakjian","year":"2018","unstructured":"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\u2013110. https:\/\/doi.org\/10.1007\/s10048-018-0544-x","journal-title":"Neurogenetics"},{"issue":"4","key":"815_CR6","doi-asserted-by":"publisher","first-page":"274","DOI":"10.1038\/gim.2012.145","volume":"15","author":"LS Chen","year":"2013","unstructured":"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\u2013281. https:\/\/doi.org\/10.1038\/gim.2012.145","journal-title":"Genet Medicine: Official J Am Coll Med Genet"},{"issue":"2","key":"815_CR8","doi-asserted-by":"publisher","first-page":"e0191228","DOI":"10.1371\/journal.pone.0191228","volume":"13","author":"M C\u00f3rdoba","year":"2018","unstructured":"C\u00f3rdoba M, Rodriguez-Quiroga SA, Vega PA, Salinas V, Perez-Maturo J, Amartino H, V\u00e1squez-Dusefante C, Medina N, Gonz\u00e1lez-Mor\u00f3n 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","journal-title":"PLoS ONE"},{"issue":"3","key":"815_CR9","doi-asserted-by":"publisher","first-page":"660","DOI":"10.1086\/515496","volume":"61","author":"BB de Vries","year":"1997","unstructured":"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\u2013667. https:\/\/doi.org\/10.1086\/515496","journal-title":"Am J Hum Genet"},{"issue":"13","key":"815_CR10","doi-asserted-by":"publisher","first-page":"901","DOI":"10.1177\/0883073820938645","volume":"35","author":"E Dermer","year":"2020","unstructured":"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\u2013907. https:\/\/doi.org\/10.1177\/0883073820938645","journal-title":"J Child Neurol"},{"issue":"4","key":"815_CR11","doi-asserted-by":"publisher","first-page":"205","DOI":"10.1016\/j.ejmg.2017.01.003","volume":"60","author":"N Even-Zohar Gross","year":"2017","unstructured":"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\u2013211. https:\/\/doi.org\/10.1016\/j.ejmg.2017.01.003","journal-title":"Eur J Med Genet"},{"issue":"5","key":"815_CR12","doi-asserted-by":"publisher","first-page":"1078","DOI":"10.3390\/ijms18051078","volume":"18","author":"J Johannessen","year":"2017","unstructured":"Johannessen J, N\u00e6rland T, Hope S, Torske T, H\u00f8yland AL, Strohmaier J, Heiberg A, Rietschel M, Djurovic S, Andreassen OA (2017) Parents\u2019 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","journal-title":"Int J Mol Sci"},{"key":"815_CR14","unstructured":"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\u2013164"},{"key":"815_CR13","unstructured":"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\u2013S290"},{"key":"815_CR15","doi-asserted-by":"publisher","first-page":"42","DOI":"10.1016\/j.yebeh.2016.07.028","volume":"63","author":"H Kanemura","year":"2016","unstructured":"Kanemura H, Sano F, Ohyama T, Sugita K, Aihara M (2016) Seizure severity in children with epilepsy is associated with their parents\u2019 perception of stigma. Epilepsy Behav 63:42\u201345. https:\/\/doi.org\/10.1016\/j.yebeh.2016.07.028","journal-title":"Epilepsy Behav"},{"issue":"4","key":"815_CR16","doi-asserted-by":"publisher","first-page":"581","DOI":"10.1177\/13674935211033466","volume":"26","author":"L Kelada","year":"2022","unstructured":"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\u2013596. https:\/\/doi.org\/10.1177\/13674935211033466","journal-title":"J Child Health Care: Professionals Working Child Hosp Community"},{"issue":"2","key":"815_CR17","doi-asserted-by":"publisher","first-page":"239","DOI":"10.3390\/genes13020239","volume":"13","author":"M Li","year":"2022","unstructured":"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","journal-title":"Genes"},{"issue":"10","key":"815_CR18","doi-asserted-by":"publisher","first-page":"2170","DOI":"10.1002\/hec.4567","volume":"31","author":"V M\u00fcller","year":"2022","unstructured":"M\u00fcller 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\u20132186. https:\/\/doi.org\/10.1002\/hec.4567","journal-title":"Health Econ"},{"issue":"5","key":"815_CR19","doi-asserted-by":"publisher","first-page":"452","DOI":"10.1097\/BPB.0b013e32835470c0","volume":"21","author":"MS Park","year":"2012","unstructured":"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\u2013456. https:\/\/doi.org\/10.1097\/BPB.0b013e32835470c0","journal-title":"J Pediatr Orthop B"},{"key":"815_CR20","doi-asserted-by":"publisher","first-page":"616569","DOI":"10.3389\/fneur.2020.616569","volume":"11","author":"C Reinhard","year":"2021","unstructured":"Reinhard C, Bachoud-L\u00e9vi AC, B\u00e4umer T, Bertini E, Brunelle A, Buizer AI, Federico A, Gasser T, Groeschel S, Hermanns S, Klockgether T, Kr\u00e4geloh-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","journal-title":"Front Neurol"},{"issue":"5","key":"815_CR21","doi-asserted-by":"publisher","first-page":"507","DOI":"10.1007\/s10897-009-9233-0","volume":"18","author":"CG Selkirk","year":"2009","unstructured":"Selkirk CG, McCarthy Veach P, Lian F, Schimmenti L, LeRoy BS (2009) Parents\u2019 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\u2013519. https:\/\/doi.org\/10.1007\/s10897-009-9233-0","journal-title":"J Genet Couns"},{"issue":"1","key":"815_CR22","doi-asserted-by":"publisher","first-page":"118","DOI":"10.3390\/ijerph19010118","volume":"19","author":"Z Zhang","year":"2021","unstructured":"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","journal-title":"Int J Environ Res Public Health"}],"container-title":["Journal of Community Genetics"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s12687-025-00815-1.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s12687-025-00815-1\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s12687-025-00815-1.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,29]],"date-time":"2025-10-29T03:12:38Z","timestamp":1761707558000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s12687-025-00815-1"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,7,4]]},"references-count":21,"journal-issue":{"issue":"6","published-online":{"date-parts":[[2025,12]]}},"alternative-id":["815"],"URL":"https:\/\/doi.org\/10.1007\/s12687-025-00815-1","relation":{"references":[{"id-type":"doi","id":"10.1177\/13623613231213431","asserted-by":"subject"}]},"ISSN":["1868-6001"],"issn-type":[{"type":"electronic","value":"1868-6001"}],"subject":[],"published":{"date-parts":[[2025,7,4]]},"assertion":[{"value":"2 January 2025","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"27 June 2025","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"4 July 2025","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"All methods were carried out in accordance with relevant guidelines and regulations. The study was approved by the Ethical Committee of the Azerbaijan Psychiatric Association with Boston Children\u2019s Hospital Institutional Review Board compliance. Informed consent was obtained from all the respondents. Data were presented in such a way that no individual can be identified.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"The authors declare no competing interests.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}]}}