Turner Syndrome White Papers

Adolescent

• • ADHD: Clinical Practice Guideline for the Diagnosis, Evaluation, and Treatment of Attention-Deficit/ Hyperactivity Disorder in Children and Adolescents
  • Medical Care of Girls with Turner Syndrome: Where are We Lacking?
  • Prevalence and Clinical Picture of Celiac Disease in Turner Syndrome
  • Quality of Life Determinants in Young Women with Turner’s Syndrome after Growth Hormone Treatment: Results of the StaTur Population-Based Cohort Study. The Journal of Clinical Endocrinology & Metabolism, 3) Carel, J., Ecosse, E., Bastie-Sigeac, I., Cabrol, S., Tauber, M., Léger, J., Nicolino, M., Brauner, R., Chaussain, J. and Coste, J. (2005).
  • Skeletal Muscle Abnormalities in Girls and Adolescents with Turner Syndrome

Adult Care 

• • A 6-year follow-up survey Turner Syndrome, 2006
  • Clinical Care of Adult Turner Syndrome – New Aspects
  • Deficient Medical Care for Adults with the Turner Syndrome
  • Health status in women with Turner syndrome: a questionnaire study on health status, education, work participation and aspects of sexual functioning
  • Turner Syndrome Guidelines Transition Pediatric – Adult Follow Up

Autoimmune 

• • Autoimmune Diseases in Turner Syndrome
  • Turner’s syndrome associated with psoriasis and alopecia areata
  • Alopecia areata and diffuse hypotrichosis associated with Ullrich-Turner syndrome. Presentation of 4patients

Bone Health

• • Fracture rate in women with oestrogen deficiency – Comparison of Turner syndrome and premature ovarian insufficiency, 2019 First published: 14 October 201
  • Turner syndrome and osteoporosis: mechanisms and prognosis.
  • Vitamin D in the New Millenium
  • Vitamin D Synopsis, Everything You Need to Know, by Sunil Wimalawansa pdf
    Pubertal Girls with Turner Syndrome and Children with Isolated SHOX Deficiency Have Similar Bone Geometry at the Radius, 2013, April 23, The Endocrine Society white paper.
  • Bone Health FAQ’s (frequently asked questions)

Books

• • New Turner Syndrome Guide for Families, Patricia Reiser, CFNP and Marsha Davenport, MD

Cancer Incidence

• • Cancer incidence in women with Turner syndrome in Great Britain: a national cohort study 

Cardiovascular

• • Cardiovascular Health in Turner Syndrome: A Scientific Statement from the American Heart Association, 2018 read.
  • Aortic dissection and moyamoya disease in Turner syndrome
  • Failure of Marfan Anatomic Criteria to Predict Risk of Aortic Dissection

Centers 

• • Child Study Center 
  • National Centers Needed to Aid Transition in Turner Syndrome

Chromosome 

• • Relation Between Genotype and Phenotype and Long-term Follow-up Studies
  • The Clinical Analysis of Small Supernumerary Marker Chromosomes in 17 Children with Mos 45X,46X,+Mar Karyotype

Clinical Care Management Guidelines

• • Clinical Practice Guidelines for Turner Syndrome, International G1 2017.full
  • CLINICAL PRACTICE GUIDELINE Care of Girls and Women with Turner Syndrome: A Guideline of the Turner Syndrome Study Group, 2007
  • Proceedings From the Turner Resource Network Symposium: The Crossroads of Health Care
  • Strategies to prevent delayed diagnosis of Turner Syndrome
  • Turner Syndrome: Do Not Miss This Diagnosis, PENS 2010

Developmental Milestones 

• • Your Child’s Developmental Important Milestones: (Birth – 4 Months)
  • Your Child’s Developmental Important Milestones: (4 Months – 8 Month)
  • Your Child’s Developmental Important Milestones: (8 Months – 12 Month)
  • Your Child’s Developmental Important Milestones: (12 Months – 24 Months)
  • Your Child’s Developmental Important Milestones: (24 Months – 36 Months)

Early Childhood 

• • Early Childhood Adversity, Toxic Stress, and the Role of the Pediatrician: Translating Developmental Science Into Lifelong Health
  • Health Supervision for Children With Turner Syndrome
  • Opportunities in Public Policy to Support Infant and Early Childhood Mental Health: The Role of Psychologists and Policymakers
  • Ureteropelvic junction obstruction and calyceal diverticulum in a child with Turner syndrome and horseshoe kidney

Education

• • U.S. Dept. of Education Provides Guidance for Teachers to Combat Bullying in Classrooms
  • Orton Gillingham Multisensory Teaching Resources
  • College List of 4 Year Structured Learning Disabilities Program
  • Understanding and Appreciating Turner Syndrome – Shelli Kessler, Stanford 
  • A meta-analysis of math performance in Turner Syndrome – Baker & Reiss, Stanford 2015

• • AAP ADHD Guidelines

• • IDEA ACT Information about the regulations of the Individuals with Disabilities Education Act site was created to provide a one-stop shop for resources related to IDEA and its implementing regulations.

• • Early Interventions

• • National Dissemination Center for Children with Disabilities Information for families and communities, providers and schools and administrators.

• • U.S. Dept. of Education Clarifies Schools’ Obligation to Provide Equal Opportunity to Students with Disabilities to Participate in Extracurricular Activities

• • Read more Turner Syndrome and Metabolic Derangements: Another Example of Fetal Programming
  • Visuospatial Executive Function in Turner Syndrome: Functional MRI and Neurocognitive Findings
  • Dr. Dean Mooney Non-Verbal Learning Disabilities School Interventions
  • Increasing School Nurse Awareness of Turner Syndrome

Endocrinology 

• • A Tribute to Henry H Turner, MD (1892-1970): A Pioneer Endocrinologist
  • Pediatric Endocrinology: Clinical Pearls for the Primary Care Provider (2015)

Growth/ Hormones 

• • Factors Influencing the One- and Two-Year Growth
  • Growth Hormone Plus Childhood Low-Dose Estrogen in Turner’s Syndrome 
  • Growth Hormone and Low Dose Estrogen in Turner Syndrome: Results of a United States Multi-Center Trial to Near Final Height
  • Growth-Promoting Strategies in Turner’s Syndrome
  • Mothers’ Experiences of Caring for Children Receiving Growth Hormone Treatment
  • QOL Pop based cohort C
  • Quantitative liver functions in Turner syndrome with and without hormone replacement therapy

Hearing

• • American Academy of Audiology
  • Ear and Hearing Problems in Turner Syndrome
  • Surgical Management of Otologic Disease in Pediatric Patients with Turner Syndrome
  • Metabolic Syndrome as a Risk Factor for Sensorineural Hearing Loss in Adult Patients with Turner Syndrome, 2020

Reproductive Health

• • Fertility Preservation in Women with Turner Syndrome: A Comprehensive Review and Practical Guidelines
  • Oocyte Cryopreservation for Fertility Preservation in Postpuberal Female Children at Risk for Premature Ovarian Failure Due to Accelerated Follicle Loss in Turner Syndrome or Cancer Treatments
  • Metabolic Effects of Oral Versus Transdermal 17-B Estradiol (E2): A Randomized Clinical Trial in Girls with Turner Syndrome 
  • Pharmacokinetics and Pharmacodynamics of Oral and Transdermal 17B Estradiol in Girls with Turner Syndrome

Plastic Surgery

• • Butterly Correction of Webbed Neck Deformity in TS

Psycho-Social

• • The Implications of Withholding a Diagnosis
  • Psychological well-being in women with Turner syndrome: Somatic and social correlates. Journal of Psychosomatic Obstetrics & Gynecology, 2004
  • QOL in TS Chromosomal Constitution C

Visuals

• • Chinese TS-Curves
  • Growth Chart US 1987

Other White Papers

• • Laboratory Guideline for Turner Syndrome
  • NIPT article 
  • Turner Syndrome and Metabolic Derangements: Another Example of Fetal Programming
  • NEMOURS Parental Permission/ Informed Consent for Participation in an Oncology Research Study

MedlinePlus – Health information
GARD – Genetic and Rare Disease Information
NIH – National Institutes of Health Eunice Kennedy Shriver

PubMed