White Papers

This site is filled with helpful resources and links.

You may also find the following resources about Turner Syndrome helpful. These materials are written for the general public.

MedlinePlus - Health information
GARD - Genetic and Rare Diseaese Information
NIH - National Institutes of Health Eunice Kennedy Shriver

You may also be interested in these resources, which are designed for healthcare professionals and researchers.

ClinicalTrials.gov - Linking patients to medical research
PubMed - Recent literature
 

Bone Health
Celiac Disease
Clinical Management
Ears and Hearing
Education: Cognitive, Psycho-social
Infertility

*Links to articles coming soon

• Metabolic Effects of Oral Versus Transdermal 17-B Estradiol (E2): A Randomized Clinical Trial in Girls with Turner Syndrome 2013 linked paper 
• Skeletal Muscle Abnormalities in Girls and Adolescents with Turner Syndrome linked paper
• National Centers Needed to Aid Transition in Turner Syndrome linked paper
• Growth Hormone and Low Dose Estrogen in Turner Syndrome: Results of a United States Multi-Center Trial to Near Final Height
• Aortic dissection and moyamoya disease in Turner syndrome
• Autoimmune Diseases in Turner Syndrome
• Clinical Practice Guideline (2007)
• Delayed diagnoses of Turner's syndrome: proposed guidelines for change.
• Endocrine Practice-Nov-2011 Medical Care Where are we know?
• Turner Syndrome: Do Not Miss This Diagnosis Journal of Pediatric Nursing (2010) 25, 66-68 Linked paper
• Failure of Marfan anatomic criteria to predict risk of aortic dissection in Turner syndrome: necessity of specific adjusted risk thresholds.

• Growth Promoting Strategies in Turner Syndrome
• Increasing School Nurse Awareness of Turner Syndrome
• Turner Syndrome Relationship Between Genotype and Phenotype
• Laboratory Guideline for Turner Syndrome
• Medical Problems of Adult Turner's Syndrome
• Growth Hormone Plus Low-Dose Estrogen In Turner's Syndrome (original article) 
• Prevalence and Clinical Picture of Celiac Disease in Turner Syndrome
• Factors Influencing the One- and Two- Year Growth Response in Children Treated with Growth Hormone: Analysis from and Observational Study
• Surgical management of otologic disease in pediatric patients with Turner syndrome
• Medical Care of Girls with Turner Syndrome: Where are we lacking? (original article)
• AAP:  Health Supervision of Children with Turner Syndrome
• Turner syndrome and metabolic derangements: Another example of fetal programming
• Turner syndrome in adulthood 
• Ureteropelvic junction obstruction and calyceal diverticulum in a child with Turner syndrome and horseshoe kidney
• Visuospatial executive function in Turner Syndrome: funcitonal MRI and neurocognitive function
• Pediatric Endocrinology: Clinical Pearls for the Primary Care Provider

• Pubertal Girls with Turner Syndrome and Children with Isolated SHOX Deficiency Have Similar Bone Geometry at the Radius, 2013, April 23, The Endocrine Society

• Bonamico, Margherita, et.al. Prevalence and Clinical Picture of Celiac Disease in Turner Syndrome. Journal of Clinical Endocrinology and Metabolism, 2002, Dec.  87: 12 (5495-5498)
• Ivarsson, SA, et. al. Prevalence of celiac disease in Turner Syndrome. Acta Paediatrica, 1999, 88: 9 (933-936)
• Arslan, D. et. al. Celiac Disease and Turner’s Syndrome: Patient Report. Journal of Pediatric Endocrinology and Metabolism, 2000, Nov.-Dec. 13: 9 (1629-1631)
• Bonamico, Margherita, et. al. Celiac Disease and Turner Syndrome. Journal of Pediatric Gastroenterology and Nutrition, 1998, May. 26: 5 (496-499)
• Lacaille, Florence, et. al. Celiac Disease, Inflammatory Colitis, and Primary Sclerosing Cholangitis in a Girl with Turner Syndrome. Journal of Pediatric Gastroenterology and Nutrition, 1995, Nov. 21: 4 (463-467)
• Nemet, D. et. al. Short Stature, Celiac Disease, and Growth Hormone Deficiency. Journal of Pediatric Endocrinology and Metabolism, 2011, Mar. 22 (979-983)
• Gillett, P.M. et. al. Increased Prevalence of Celiac Disease in Girls with Turner Syndrome. Journal of Pediatric Gastroenterology and Nutrition, 1999, Oct. 29: 4 (497)Websites

• NIH Clinical Guidelines for Turner Syndrome, 2007
• 2014 Symposium Proceedings: The Crossroads of Health Care Research and Health Care Delivery
• Turner Syndrome: Do Not Miss This Diagnosis, PENS 2010

• Childhood Hearing Screening Guidelines -  American Academy of Audiology 2011
• Ear and Hearing Problems in Turner Syndrome - M Hultcrantz, Stockholm 2002
• Hearing Loss & Audiologic Management of the Patient with Turner’s Syndrome - Lisa Zeitoun, Au. D. CCC-A 2013 
   

• Understanding and Appreciating Turner Syndrome - Shelli Kessler, Stanford ​
• A meta-analysis of math performance in Turner Syndrome - Baker & Reiss, Stanford 2015
• When to Share the Diagnosis with Your Daughter - If after reading this white paper you feel compelled to share your story, we've created a place to do so here! More info on Sharing the Diagnosis

​Infertility

• Pregnancy in Turner's syndrome carries high hypertensive risk - Sara Freeman, Ob.Gyn.News
• American Society of Reproductive Medicine: Increased maternal cardiovascular mortality associated with pregnancy in women with Turner Syndrome​ white paper  online CME
• When Infertility Strikes the Family: Helping the System Cope - Sharon N. Covington, MSW & Linda Hammer Burns, PhD 2002
• Breaking bad news concerning fertility - Ann Lalos, Oxford Journals