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Endo-ERN Publications

Below a list of publications is given related to Endo-ERN.

 

2023

Acquired hypothalamic dysfunction in childhood: ‘what do patients need?’ – an Endo-ERN survey

van Roessel IMAA, de Graaf JP, Biermasz NR, Charmandari E, & van Santen HM.(Endocrine Connections., Volume 12: Issue 10.)

An overview of the outreach of the 2019–2021 Endo-ERN knowledge generation webinars

Iotova V, Schalin-Jäntti C, Van Beuzekom C, Bruegmann P, Broesamle M, Hiort O, & Pereira AM.(Endocrine Connections., Volume 12: Issue 9.)

Reduced serum concentrations of biomarkers reflecting Leydig and Sertoli cell function in male patients with congenital adrenal hyperplasia

Johannsen TH, Albrethsen J, Neocleous V, Baronio F, Cools M, Aksglaede L, … Juul A.(Endocrine Connections., Volume 12: Issue 8.)

Skin manifestations in rare types of diabetes and other endocrine conditions

Reschke F, Biester T, von dem Berge T, Jamiolkowski D, Hasse L, Dassie F, … Danne T.(Endocrine Connections., Volume 12: Issue 7.)

Treatment burden, adherence, and quality of life in children with daily GH treatment in France

Coutant R, Tauber M, Demaret B, Henocque R, Brault Y, Montestruc F, … Polak M.(Endocrine Connections., Volume 12: Issue 4.)

Outcome of COVID-19 infections in patients with adrenal insufficiency and excess

Nowotny HF, Bryce J, Ali SR, Giordano R, Baronio F, Chifu I, … Reisch N.(Endocrine Connections., Volume 12: Issue 4.)

Serum LH/FSH ratios in 87 infants with differences of sex development

Ljubicic ML, Johannsen TH, Fischer MB, Upners EN, Busch AS, Main KM, … Juul A.(Endocrine Connections., Volume 12: Issue 3.)

An update on the long-term outcomes of prenatal dexamethasone treatment in congenital adrenal hyperplasia

van’t Westeinde A, Karlsson L, Messina V, Wallensteen L, Brösamle M, Dal Maso G, … Lajic S.(Endocrine Connections., Volume 12: Issue 4.)

Development of a pediatric differentiated thyroid carcinoma registry within the EuRRECa project: rationale and protocol

Clement SC, Visser WE, Lebbink CA, Albano D, Claahsen-van der Grinten HL, Czarniecka A, … van Santen HM.(Endocrine Connections., Volume 12: Issue 3.)

Mapping of the current transition of care practice for patients with pituitary disease at Endo-ERN reference centers

Shishkov SR, Tuccillo L, Iotova VM, Pivonello R, Pelsma IC, Pereira AM, … Endo-ERN Pituitary Transition of Care Study Group.(Endocrine Connections., Volume 12: Issue 2.)
2022

The transition from pediatric to adult care in individuals with Prader-Willi syndrome

Poitou C, Holland A, Höybye C, de Graaff LCG, Bottius S, Otterlei B, & Tauber M.(Endocrine Connections., Volume 12: Issue 1.)

Starting point for benchmarking outcomes and reporting of pituitary adenoma surgery within the European Reference Network on Rare Endocrine Conditions (Endo-ERN): results from a meta-analysis and survey study

Zamanipoor Najafabadi AH, van der Meulen M, Priego Zurita AL, Ahmed SF, van Furth WR, Charmandari E, … Biermasz N.(Endocrine Connections., Volume 12: Issue 1.)

Doctors, teach your adrenal insufficiency patients well: provide them with a European Emergency Card!

Beun JG, Burman P, Kämpe O, Husebye ES, Hahner S, Kristensen J, … Dahlqvist P.(Endocrine Connections., Volume 12: Issue 1.)

Patient journey experiences may contribute to improve healthcare for patients with rare endocrine diseases

Webb SM, Kristensen J, Nordenström A, Vitali D, Amodru V, Wiehe LK, & Bolz-Johnson M.(Endocrine Connections., Volume 11: Issue 12.)

The genetic diagnosis of rare endocrine disorders of sex development and maturation: a survey among Endo-ERN centres

Persani L, Cools M, Ioakim S, Faisal Ahmed S, Andonova S, Avbelj-Stefanija M, … Rossetti R.(Endocrine Connections., Volume11: Issue 12.)

Comprehensive genetic testing approaches as the basis for personalized management of growth disturbances: current status and perspectives

van der Kaay DCM, Rochtus A, Binder G, Kurth I, Prawitt D, Netchine I, … Eggermann T.(Endocrine Connections., doi.org/10.1530/EC-22-0277.)

Impact of gender-affirming treatment on bone health in transgender and gender diverse youth

Ciancia S, Dubois V, & Cools M.(Endocrine Connections., doi.org/10.1530/EC-22-0280.)

A Critical Evaluation of the EU-virtual consultation platform (CPMS) within the European Reference Network on Rare Endocrine Conditions

White EK, Wagner IV, Beuzekom C van, Iotova V, Ahmed SF, Hiort O, & Pereira A.(Endocrine Connections., doi.org/10.1530/EC-22-0281.)

Testosterone in men with hypogonadism and transgender males: a systematic review comparing three different preparations

Madsen MC, Heijer MD, Pees C, Biermasz NR, & Bakker LEH.(Endocrine Connections., doi.org/10.1530/EC-22-0112.)

We mind your step: understanding and preventing drop-out in the transfer from paediatric to adult tertiary endocrine healthcare

Davidse K, van Staa A, Geilvoet W, van Eck JP, Pellikaan K, Baan J, … de Graaff LCG.(Endocrine Connections., doi.org/10.1530/EC-22-0025.)

Current clinical practice for thromboprophylaxis management in patients with Cushing’s syndrome across reference centers of the European Reference Network on Rare Endocrine Conditions (Endo-ERN)

F M van Haalen, M Kaya, I C M Pelsma, O M Dekkers, N R Biermasz, S C Cannegieter, … Endo-ERN Cushing and Thrombosis study group.(Orphanet J Rare Dis., 178. doi: 10.1186/s13023-022-02320-x.)

Pubertal induction and transition to adult sex hormone replacement in patients with congenital pituitary or gonadal reproductive hormone deficiency: an Endo-ERN clinical practice guideline

A Nordenström, S F Ahmed, E van den Akker, J Blair, M Bonomi, C Brachet, … O M Dekkers 2.(Eur J Endocrinology., 186(6):G9-G49. doi: 10.1530/EJE-22-0073.)

ENDO-ERN ON RARE ENDOCRINE CONDITIONS: Endo-ERN in its fifth year: a pinch of care, science, curiosity and new horizons

Iotova V, Bertherat J, Mastorakos G, Hiort O, & Pereira AM.(Endocrine Connections., doi.org/10.1530/EC-22-0082.)
2021

Consensus on diagnosis and management of Cushing’s disease: a guideline update

Maria Fleseriu, Richard Auchus, Irina Bancos, Anat Ben-Shlomo, Jerome Bertherat, Nienke R Biermasz, … Beverly M K Bill.(Lancet Diabetes Endocrinol., .)

ESE Clinical Practice Guideline on functioning and nonfunctioning pituitary adenomas in pregnancy

A Luger, L H A Broersen, N R Biermasz, B M K Biller, M Buchfelder, P Chanson, … O M Dekkers.(Eur J Endocrinology., 185(3):G1-G33. doi: 10.1530/EJE-21-0462.)

Thyroid Microcarcinoma in Pediatric Population in Romania

Andreea-Ioana Stefan, Andra Piciu, Maria Margareta Cosnarovici, Monica Dragomir, Romana Netea-Maier, & Doina Piciu.(MDPI., Children 2021, 8(5), 422;.)

Perspectives of the European Society of Endocrinology (ESE) and the European Society of Paediatric Endocrinology (ESPE) on rare endocrine disease

Hokken-Koelega A & Reincke M.(Endocrine., 2021(2).)

European Reference Networks: challenges and opportunities

Birute Tumiene, Holm Graessner, Irene MJ Mathijssen, Alberto M Pereira, Franz Schaefer, Maurizio Scarpa, … Helene Dollfus & Nicoline Hoogerbrugge.(J Community Genet., 2021.)

Congenital Hypothyroidism: A 2020–2021 Consensus Guidelines Update—An ENDO-European Reference Network Initiative Endorsed by the European Society for Pediatric Endocrinology and the European Society for Endocrinology

Paul van Trotsenburg, Athanasia Stoupa, Juliane Léger, Tilman Rohrer, Catherine Peters, Laura Fugazzola, … and Michel Polak.(Mary Ann Liebert, Inc., ThyroidVol. 31, No. 3.)

Patient’s view on better care

Beun, Kristensen, Brosamle, & van den Berg.(Endocrine., 2021(2).)