المؤلفون: Tofts, Louise Jane¹ (AUTHOR), Simmonds, Jane^2,3 (AUTHOR), Schwartz, Sarah B.⁴ (AUTHOR), Richheimer, Roberto M.⁵ (AUTHOR), O'Connor, Constance⁴ (AUTHOR), Elias, Ellen^6,7 (AUTHOR), Engelbert, Raoul⁸ (AUTHOR), Cleary, Katie⁹ (AUTHOR), Tinkle, Brad T.¹⁰ (AUTHOR), Kline, Antonie D.¹¹ (AUTHOR), Hakim, Alan J.¹² (AUTHOR) alan.hakim@ehlers-danlos.com, van Rossum, Marion A. J.¹³ (AUTHOR), Pacey, Verity¹ (AUTHOR)

المصدر: Orphanet Journal of Rare Diseases. 5/4/2023, Vol. 18 Issue 1, p1-10. 10p.

مصطلحات موضوعية: *JOINT hypermobility, *EHLERS-Danlos syndrome, *MEDICAL research, *STANDARD deviations, *CLINICAL medicine, *BIOMARKERS, *CHILD patients

المؤلفون: Louise Jane Tofts, Jane Simmonds, Sarah B. Schwartz, Roberto M. Richheimer, Constance O’Connor, Ellen Elias, Raoul Engelbert, Katie Cleary, Brad T. Tinkle, Antonie D. Kline, Alan J. Hakim, Marion A. J. van Rossum, Verity Pacey

المصدر: Orphanet Journal of Rare Diseases, Vol 18, Iss 1, Pp 1-10 (2023)

مصطلحات موضوعية: Child, Adolescent, Joint hypermobility, Ehlers–Danlos syndrome, Medicine

وصف الملف: electronic resource

العلاقة: https://doaj.org/toc/1750-1172Test

الوصول الحر: https://doaj.org/article/20556d8ab88d4971b59a3dff2b005a3bTest

المؤلفون: Walter, Suzy Mascaro, Dai, Zheng, Wang, Kesheng

المصدر: Children; Jul2023, Vol. 10 Issue 7, p1133, 12p

مصطلحات موضوعية: OBESITY risk factors, ANXIETY diagnosis, DIAGNOSIS of mental depression, EHLERS-Danlos syndrome, STATISTICS, BODY weight, MIGRAINE, CROSS-sectional method, MANN Whitney U Test, SEX distribution, DESCRIPTIVE statistics, CHI-squared test, RESEARCH funding, ELECTRONIC health records, LOGISTIC regression analysis, DATA analysis, DATA analysis software, COMORBIDITY, RURAL population, SECONDARY analysis, RESTLESS legs syndrome, CHILDREN

المؤلفون: Rolfes, Mary C, Deyle, David R, King, Katherine S, Hand, Jennifer L, Graff, Arne H, Derauf, Chris

مصطلحات موضوعية: Applied and Developmental Psychology, Human Society, Criminology, Psychology, Social Work, Pediatric, Rare Diseases, Clinical Research, Injuries and accidents, Adolescent, Case-Control Studies, Child, Child, Preschool, Diagnosis, Differential, Ehlers-Danlos Syndrome, Female, Fractures, Bone, Humans, Incidence, Infant, Infant, Newborn, Logistic Models, Male, Minnesota, Odds Ratio, Retrospective Studies, Child abuse, Ehlers-Danlos syndrome, Fractures, Bone, Developmental & Child Psychology, Social work, Applied and developmental psychology

وصف الملف: application/pdf

الوصول الحر: https://escholarship.org/uc/item/4f74b7wxTest

المؤلفون: William R. Black, Lora L. Black, Jordan T. Jones

مصطلحات موضوعية: Neurology and Neuromuscular Diseases, Nursing not elsewhere classified, Paediatrics, Ehlers-Danlos syndrome, adolescent, pediatrics, provider knowledge, diagnosis, treatment, qualitative

العلاقة: https://figshare.com/articles/journal_contribution/sj-pdf-1-gph-10_1177_2333794X231212081_Supplemental_material_for_Barriers_to_the_Diagnosis_Care_and_Management_of_Pediatric_Patients_With_Ehlers-Danlos_Syndrome_in_the_United_States_A_Qualitative_Analysis/24627883Test

الإتاحة: https://doi.org/10.25384/sage.24627883.v1Test
https://figshare.com/articles/journal_contribution/sj-pdf-1-gph-10_1177_2333794X231212081_Supplemental_material_for_Barriers_to_the_Diagnosis_Care_and_Management_of_Pediatric_Patients_With_Ehlers-Danlos_Syndrome_in_the_United_States_A_Qualitative_Analysis/24627883Test

المؤلفون: Ward, John H, Weir, Elizabeth, Allison, Carrie, Baron-Cohen, Simon

مصطلحات موضوعية: Autism, Chronic illness, Ehlers-Danlos syndrome, Gastrointestinal condition, Neurological condition, Physical health, Rheumatological condition, Humans, Adolescent, Adult, Female, Male, Autistic Disorder, Cross-Sectional Studies, Body Mass Index, Educational Status, Exercise

وصف الملف: application/zip; text/xml; application/pdf

العلاقة: https://www.repository.cam.ac.uk/handle/1810/361158Test

الإتاحة: https://www.repository.cam.ac.uk/handle/1810/361158Test

المؤلفون: Suzy Mascaro Walter, Zheng Dai, Kesheng Wang

المصدر: Children; Volume 10; Issue 7; Pages: 1133

مصطلحات موضوعية: rural, pediatric, adolescent, migraine, obstructive sleep apnea syndrome (OSAS), narcolepsy, restless leg syndrome (RLS), elevated blood pressure, depression, anxiety, Ehlers–Danlos Syndrome (EDS)

وصف الملف: application/pdf

العلاقة: Child Neurology; https://dx.doi.org/10.3390/children10071133Test

الإتاحة: https://doi.org/10.3390/children10071133Test

المؤلفون: Maarj, Muhammad, Pacey, Verity, Tofts, Louise, Clapham, Matthew, Garcia, Xavier Gironès, Coda, Andrea

المصدر: JMIR Pediatrics & Parenting; Oct-Dec2022, Vol. 5 Issue 4, p1-9, 9p

مصطلحات موضوعية: VISUAL analog scale, JOINT hypermobility, ACQUISITION of data, MOBILE health, EHLERS-Danlos syndrome

المؤلفون: Janecke, Andreas R, Li, Ben, Boehm, Manfred, Krabichler, Birgit, Rohrbach, Marianne, Müller, Thomas, Fuchs, Irene, Golas, Gretchen, Katagiri, Yasuhiro, Ziegler, Shira G, Gahl, William A, Wilnai, Yael, Zoppi, Nicoletta, Geller, Herbert M, Giunta, Cecilia, Slavotinek, Anne, Steinmann, Beat

المصدر: American Journal of Medical Genetics Part A. 170(1)

مصطلحات موضوعية: Biomedical and Clinical Sciences, Ophthalmology and Optometry, Rare Diseases, Brain Disorders, Clinical Research, Pediatric, Adolescent, Adult, Child, Child, Preschool, Connective Tissue Diseases, Dermis, Ehlers-Danlos Syndrome, Female, Fibroblasts, Fluorescent Antibody Technique, Indirect, Humans, Infant, Male, Middle Aged, Mutation, Sulfotransferases, Young Adult, dermatan sulfate, deficiency, dermatan sulfate epimerase, N-acetylgalactosamine 4-O-sulfotransferase, connective tissue, Ehlers-Danlos syndrome, adducted thumb, clubfoot, proteoglycan, arthrogryposis, myopathy, Genetics, Clinical Sciences, Clinical sciences

وصف الملف: application/pdf

الوصول الحر: https://escholarship.org/uc/item/61r2r3nnTest

المؤلفون: Maarj, Muhammad, Pacey, Verity, Tofts, Louise, Clapham, Matthew, Gironès Garcia, Xavier, Coda, Andrea

المصدر: Maarj , M , Pacey , V , Tofts , L , Clapham , M , Gironès Garcia , X & Coda , A 2022 , ' Validation of an electronic visual analog scale app for pain evaluation in children and adolescents with symptomatic hypermobility : cross-sectional study ' , JMIR Pediatrics and Parenting , vol. 5 , no. 4 , e41930 , pp. 1-9 . https://doi.org/10.2196/41930Test

مصطلحات موضوعية: hypermobility syndrome, Ehlers-Danlos syndrome, hypermobility, hypermobile, mobile application, mobile app, pain measurement, pain, validation, validate, scale, measure, pain severity, pediatric, visual analogue scale, mHealth, mobile health, children, adolescent, youth, child, digital health tool

وصف الملف: application/pdf

الإتاحة: https://doi.org/10.2196/41930Test
https://researchers.mq.edu.au/en/publications/f25bac75-b2d7-400a-a505-036fc48342e4Test
https://research-management.mq.edu.au/ws/files/213666584/Publisher_version_open_access_.pdfTest
http://www.scopus.com/inward/record.url?scp=85145363624&partnerID=8YFLogxKTest