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    Endo-ERN is focused on 8 main thematic groups (MTGs) which cover rare and/or complex endocrine conditions

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/ Publications Overview / Publications Database

Endo-ERN Publications Database

RDD IssuesBack to Publications Overview

Filter list of publications

890 publication(s) found matching the search criteria

Abstracts of the 2023 Pediatric Endocrine Society (PES) Annual Meeting’ to Hormone Research in Paediatrics


Author(s): Program Chairs, PES 2023 Annual Meeting Dr. Leena Nahata, Columbus, OH Dr. Takara Stanley, Boston, MA
Affiliated Institution / ERN: Beaumont & CHI - Dublin ;
Condition / Disease: growth hormone deficiency
Publication: Hormone Research in Paediatrics v96.Suppl. 3 p1-399 Year: 2023 ORPHAcode / other: ORPHA101957; ORPHA95488
DOI: 10.1159/000531602 Keywords:
MTG6

Liver fat accumulation more than fibrosis causes early liver dynamic dysfunction in patients with non-alcoholic fatty liver disease


Author(s): Di Ciaula A, Shanmugam H, Ribeiro R, Pina A, Andrade R, Bonfrate L, Raposo JF, Macedo MP, Portincasa P
Affiliated Institution / ERN: APDP – Diabetes Portugal ;
Condition / Disease: non-alcoholic fatty liver disease
Publication: European Journal of Internal Medicine v107 p52-59 Year: 2023 ORPHAcode / other:
DOI: 10.1016/j.ejim.2022.10.024 Keywords: Breath test,Fibroscan,Liver function,Liver steatosis,Liver stiffness,Metabolic-associated fatty liver disease,Non-alcoholic fatty liver disease

Position paper from the Endocrine Task Force of the European Organisation for Research and Treatment of Cancer (EORTC) on the management and shared decision making in patients with low-risk micro papillary thyroid carcinoma


Author(s): Koot A, Soares P, Robenshtok E, Locati LD, de la Fouchardiere C, Luster M, Bongiovanni M, Hermens R, Ottevanger P, Geenen F, Bartѐs B, Rimmele H, Durante C, Nieveen-van Dijkum E, Stalmeier P, Dedecjus M, Netea-Maier R
Affiliated Institution / ERN: Amsterdam UMC ; São João University Hospital(CHUSJ) ;
Condition / Disease: papillary thyroid carcinoma
Publication: European Journal of Cancer v179 p98-112 Year: 2023 ORPHAcode / other: ORPHA146
DOI: 10.1016/j.ejca.2022.11.005 Keywords: Microcarcinoma,Papillary,Shared decision making,Thyroid,Treatment options
MTG8

Multi-omic integration reveals cell-type-specific regulatory networks of insulin resistance in distinct ancestry populations


Author(s): Xu P, Wang M, Sharma NK, Comeau ME, Wabitsch M, Langefeld CD, Civelek M, Zhang B, Das SK
Affiliated Institution / ERN: Ulm University Medical Center ;
Condition / Disease: Insulin-resistance syndrome
Publication: Cell Systems v14.1 p41-57.e8 Year: 2023 ORPHAcode / other: ORPHA181368
DOI: 10.1016/j.cels.2022.12.005 Keywords: African American,European American,adipose,eQTL,gene causal network,gene co-expression network,gene module,insulin resistance,key driver,muscle
MTG3

Deescalating Follow-up After Hemithyroidectomy for Patients With Low-risk Papillary Thyroid Microcarcinoma


Author(s): van Dijk SPJ, Coerts HI, Lončar I, Verhoef C, Kruijff S, Engelsman AF, Peeters RP, van Ginhoven TM
Affiliated Institution / ERN: University Medical Center Groningen ;
Condition / Disease: Follicular thyroid carcinoma
Publication: JAMA Otolaryngology–Head & Neck Surgery v149.1 p42 Year: 2023 ORPHAcode / other: ORPHA146
DOI: 10.1001/jamaoto.2022.3686 Keywords:
MTG8

Potentialities of Gene Therapy in Pediatric Endocrinology


Author(s): Frontino G, Stancampiano MR, Aiuti A
Affiliated Institution / ERN: Semmelweis University ;
Condition / Disease: Rare endocrine conditions
Publication: Hormone Research in Paediatrics v96.6 p646-657 Year: 2023 ORPHAcode / other: ORPHA97978
DOI: 10.1159/000520965 Keywords: Gene therapy,Monogenic disease,Pediatric endocrine disease,Type 1 diabetes
MTG1 MTG2 MTG3 MTG4 MTG5 MTG6 MTG7 MTG8

Continuous glucose monitoring and metrics for clinical trials: an international consensus statement


Author(s): Battelino T, Alexander CM, Amiel SA, Arreaza-Rubin G, Beck RW, Bergenstal RM, Buckingham BA, Carroll J, Ceriello A, Chow E, Choudhary P, Close K, Danne T, Dutta S, Gabbay R, Garg S, Heverly J, Hirsch IB, Kader T, Kenney J, Kovatchev B, Laffel L, Maahs D, Mathieu C, Mauricio D, Nimri R, Nishimura R, Scharf M, Del Prato S, Renard E, Rosenstock J, Saboo B, Ueki K, Umpierrez GE, Weinzimer SA, Phillip M
Affiliated Institution / ERN: University Medical Centre Ljubljana ;
Condition / Disease: Continuous glucose monitoring
Publication: The Lancet Diabetes & Endocrinology v11.1 p42-57 Year: 2023 ORPHAcode / other:
DOI: 10.1016/s2213-8587(22)00319-9 Keywords:
MTG3

Pubertal and Gonadal Outcomes in 46,XY Individuals with Partial Androgen Insensitivity Syndrome Raised as Girls


Author(s): Guaragna-Filho G, Guerra-Junior G, Tadokoro-Cuccaro R, Hughes IA, Barros BA, Hiort O, Balsamo A, Guran T, Holterhus PM, Hannema S, Poyrazoglu S, Darendeliler F, Bryce J, Ahmed SF, Quigley CA
Affiliated Institution / ERN: Universitätsklinikum Schleswig-Holstein ;
Condition / Disease: Partial androgen insensitivity syndrome
Publication: Sexual Development v17.1 p16-25 Year: 2023 ORPHAcode / other: ORPHA754; ORPHA90797;
DOI: 10.1159/000526997 Keywords: Androgen insensitivity syndrome,Differences of sex development,Disorders of sex development,Partial androgen insensitivity syndrome,Puberty

Type 1 diabetes mellitus prevention


Author(s): Groele L, Szypowska A
Affiliated Institution / ERN: Public Pediatric Teaching Hospital ;
Condition / Disease: diabetes type 1
Publication: Pediatric Endocrinology Diabetes and Metabolism v29.4 p209-213 Year: 2023 ORPHAcode / other:
DOI: 10.5114/pedm.2023.134130 Keywords: b cell.,prevention,diabetes mellitus
MTG3

The views of teenagers with obesity, their caregivers, and doctors: a plain language summary of the ACTION Teens global survey


Author(s): Mooney V, Baur LA, Bereket A, Bin-Abbas B, Chen W, Fernández-Aranda F, Nieto NG, López Siguero JP, Maffeis C, Osorto CK, Reynoso R, Rhie Y, Toro-Ramos M, Halford JC
Affiliated Institution / ERN: AOUI Verona ;
Condition / Disease: obesity
Publication: Journal of Comparative Effectiveness Research v12.1 Year: 2023 ORPHAcode / other: ORPHA77828
DOI: 10.2217/cer-2022-0164 Keywords: adolescents,caregivers,doctors,healthcare professionals,lay summary,obesity,plain language summary,survey,teenagers,weight,weight management
MTG5

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


Author(s): Poitou C, Holland A, Höybye C, de Graaff LCG, Bottius S, Otterlei B, Tauber M
Affiliated Institution / ERN: Assistance Publique-Hôpitaux de Paris, Hôpital Pitié-Salpétrière ;
Condition / Disease: Prader Willi syndrome
Publication: Endocrine Connections v12.1 Year: 2023 ORPHAcode / other: ORPHA739
DOI: 10.1530/ec-22-0373 Keywords: Prader-Willi syndrome,transition
MTG5

Availability and access to pediatric diabetes care: a global descriptive study


Author(s): Pulungan AB, de Beaufort C, Ratnasari AF, Puteri HA, Lewis-Watts L, Bhutta ZA
Affiliated Institution / ERN: Centre Hospitalier de Luxembourg ;
Condition / Disease: pediatric diabetes care
Publication: Clinical Pediatric Endocrinology v32.3 p137-146 Year: 2023 ORPHAcode / other: ORPHA101952
DOI: 10.1297/cpe.2023-0017 Keywords: access,availability,children,diabetes,type 1 diabetes mellitus (T1DM)
MTG3

Lessons Learned from 17 Years of Multidisciplinary Care for Differences of Sex Development Patients at a Single Indonesian Center


Author(s): Faradz SM, Listyasari N, Utari A, Ariani MD, Juniarto AZ, Santosa A, Ediati A, Rinne TK, Westra D, Claahsen-van der Grinten H, de Jong FH, Drop SL, Ayers K, Sinclair A
Affiliated Institution / ERN: Radboud University Medical Centre Nijmegen ;
Condition / Disease: DSD
Publication: Sexual Development v17.4-6 p170-180 Year: 2023 ORPHAcode / other: ORPHA98085; ORPHA2982; ORPHA325546;
DOI: 10.1159/000534085 Keywords: Chromosomes,Disorders of sex development,Genes,Indonesia,Multidisciplinary team
MTG7

Growth Hormone Dose Modulation and Final Height in Short Children Born Small for Gestational Age: French Real-Life Data


Author(s): Coutant R, Leheup B, Nicolino M, Salles J
Affiliated Institution / ERN: CHU d'Angers ;
Condition / Disease: Growth Hormone Dose Modulation
Publication: Hormone Research in Paediatrics v96.5 p495-508 Year: 2023 ORPHAcode / other: ORPHA90692; ORPHA631;
DOI: 10.1159/000530572 Keywords: Dose modulation,Growth hormone,Real-world data,Small for gestational age
MTG5

Testicular Architecture of Men with 46,XX Testicular Disorders of Sex Development


Author(s): Hiort M, Rohayem J, Knaf R, Laurentino S, Berglund A, Gravholt CH, Gromoll J, Wistuba J
Affiliated Institution / ERN: Aarhus University Hospital ;
Condition / Disease: 46XX Testicular Disorders of Sex Development
Publication: Sexual Development v17.1 p32-42 Year: 2023 ORPHAcode / other: ORPHA325546
DOI: 10.1159/000528955 Keywords: 46,XX TDSD,Leydig cells,Sertoli cells,Testis histology
MTG7

Challenges Waiting for an Adult with DSD


Author(s): Nowotny HF, Reisch N
Affiliated Institution / ERN: Klinikum der Universität München ;
Condition / Disease: DSD
Publication: Hormone Research in Paediatrics v96.2 p207-221 Year: 2023 ORPHAcode / other: ORPHA98085; ORPHA2982; ORPHA325546;
DOI: 10.1159/000527433 Keywords: 46,XY DSD,Adult care,Androgen insensitivity syndrome,Comorbidities,Congenital adrenal hyperplasia,Disorders/differences of sex development,Gonadal dysgenesis,Klinefelter syndrome,Long-term outcome,Transition,Turner syndrome
MTG7

A new DLK1 defect in a family with idiopathic central precocious puberty: elucidation of the male phenotype


Author(s): Palumbo S, Cirillo G, Sanchez G, Aiello F, Fachin A, Baldo F, Pellegrin MC, Cassio A, Salerno M, Maghnie M, Faienza MF, Wasniewska M, Fintini D, Giacomozzi C, Ciccone S, Miraglia del Giudice E, Tornese G, Grandone A
Affiliated Institution / ERN: AOU University of Campania "Luigi Vanvitelli", Naples ;
Condition / Disease: DLK1 defect; idiopathic central precocious puberty;
Publication: Journal of Endocrinological Investigation v46.6 p1233-1240 Year: 2022 ORPHAcode / other: ORPHA650182
DOI: 10.1007/s40618-022-01997-y Keywords: DLK1,Genetics,Mutations,Precocious puberty, molecular screening
MTG7

Resistance to Somatostatin Analogs in Italian Acromegaly Patients: The MISS Study


Author(s): Berton AM, Prencipe N, Bertero L, Baldi M, Bima C, Corsico M, Bianchi A, Mantovani G, Ferraù F, Sartorato P, Gagliardi I, Ghigo E, Grottoli S
Affiliated Institution / ERN: Foundation IRCCS CA'Granda Ospedale Maggiore polyclinic - Milan ;
Condition / Disease: Acromegaly
Publication: Journal of Clinical Medicine v12.1 p25 Year: 2022 ORPHAcode / other: ORPHA963
DOI: 10.3390/jcm12010025 Keywords: CAM5.2 granulation pattern,SSTR2,first-generation somatostatin receptor ligands,growth hormone-secreting adenoma,magnetic resonance imaging,precision medicine
MTG6

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


Author(s): Poitou C, Holland A, Höybye C, de Graaff LCG, Bottius S, Otterlei B, Tauber M
Affiliated Institution / ERN:
Condition / Disease:
Publication: Endocrine Connections Volume 12: Issue 1 Year: 2022 ORPHAcode / other:
DOI: 10.1530/ec-22-0373 Keywords:
MTG5

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


Author(s): Zamanipoor Najafabadi AH, van der Meulen M, Priego Zurita AL, Ahmed SF, van Furth WR, Charmandari E, Hiort O, Pereira A, Dattani M, Vitali D, de Graaf J, Biermasz N
Affiliated Institution / ERN: Leiden University Medical Center ; Assistance Publique-Hôpitaux de Marseille ; IRCCS Ospedale Policlinico San Martino – Genova ; Universitätsklinikum Schleswig-Holstein ; University Hospital Essen ;
Condition / Disease: Pituitary adenoma
Publication: Endocrine Connections Volume 12: Issue 1 Year: 2022 ORPHAcode / other: ORPHA99408
DOI: 10.1530/ec-22-0349 Keywords: Endo-ERN,pituitary,registry,surgery
MTG6

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


Author(s): Beun JG, Burman P, Kämpe O, Husebye ES, Hahner S, Kristensen J, Noordzij A, Dahlqvist P
Affiliated Institution / ERN:
Condition / Disease:
Publication: Endocrine Connections Volume 12: Issue 1 Year: 2022 ORPHAcode / other:
DOI: 10.1530/EC-22-0345 Keywords:
MTG1

Pure-protein load for children with type 1 diabetes: is any additional insulin needed? A randomized controlled study


Author(s): Dżygało K, Indulska K, Szypowska A
Affiliated Institution / ERN: Public Pediatric Teaching Hospital ;
Condition / Disease: Diabetes mellitus type 1
Publication: Acta Diabetologica v60.3 p337-343 Year: 2022 ORPHAcode / other: ORPHA181371
DOI: 10.1007/s00592-022-02012-9 Keywords: High-protein beverage,Insulin pump,Postprandial glycemia,Pure-protein beverage,Square bolus
MTG3

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


Author(s): Webb SM, Kristensen J, Nordenström A, Vitali D, Amodru V, Wiehe LK, Bolz-Johnson M
Affiliated Institution / ERN:
Condition / Disease:
Publication: Endocrine Connections Volume 11: Issue 12 Year: 2022 ORPHAcode / other:
DOI: 10.1530/ec-22-0385 Keywords:

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


Author(s): Persani L, Cools M, Ioakim S, Faisal Ahmed S, Andonova S, Avbelj-Stefanija M, Baronio F, Bouligand J, Bruggenwirth HT, Davies JH, De Baere E, Dzivite-Krisane I, Fernandez-Alvarez P, Gheldof A, Giavoli C, Gravholt CH, Hiort O, Holterhus P, Juul A, Krausz C, Lagerstedt-Robinson K, McGowan R, Neumann U, Novelli A, Peyrassol X, Phylactou LA, Rohayem J, Touraine P, Westra D, Vezzoli V, Rossetti R
Affiliated Institution / ERN: Aarhus University Hospital ;
Condition / Disease: DSD
Publication: Endocrine Connections v11.12 Year: 2022 ORPHAcode / other: ORPHA98085; ORPHA2982; ORPHA325546
DOI: 10.1530/ec-22-0367 Keywords: congenital hypogonadotropic hypogonadism,disorders of sex development,next-generation sequencing,primary ovarian insufficiency,rare diseases or syndromes
MTG7

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)


Author(s): van Haalen FM, Kaya M, Pelsma ICM, Dekkers OM, Biermasz NR, Cannegieter SC, Huisman MV, van Vlijmen BJM, Feelders RA, Klok FA, Pereira AM, Stochholm K, Fliers E, Castinetti F, Brue T, Bertherat J, Scaroni C, Colao A, Giordano R, Druce MR, Beckers A, Spranger J, Driessens N, Maiter D, Feldt-Rasmussen U, Feelders R, Webb SM, Dattani M, Husebye E, Zilaitiene B, Gaztambide S, Gatto F, Ferone D, Persani L, Chiodini I, Höybye C, Pereira AM, Biermasz NR, Klok FA, Dekkers OM, Meijer OC, Reincke M, Vila G, Perry C, Heck A, Stancampiano MR, van de Ven A, Johannsson G, Ragnarsson O, Tóth M, Volke V, Toumba M, Canu L, Vojtková J, Al-Mrayat M, Fassnacht M, Detomas M, Karavitaki N, van der Klauw MM, Groselj U, Elenkova A, Unuane D
Affiliated Institution / ERN: Hôpital Universitaire de Bruxelles (HUDERF-Erasme) ; Leiden University Medical Center ; Erasmus MC: University Medical Center Rotterdam ;
Condition / Disease: Cushing syndrome due to cortisol-producing adrenocortical adenoma
Publication: Orphanet Journal of Rare Diseases v17.1 Year: 2022 ORPHAcode / other: ORPHA647758
DOI: DOI: 10.1186/s13023-022-02320-x Keywords: Cushing’s syndrome,Endo-ERN survey,Guidelines,Hemostasis,Hypercortisolism,Thromboprophylaxis,Venous thromboembolism
MTG1 MTG6

Long-term efficacy and safety of osilodrostat in Cushing’s disease: final results from a Phase II study with an optional extension phase (LINC 2)


Author(s): Fleseriu M, Biller BMK, Bertherat J, Young J, Hatipoglu B, Arnaldi G, O’Connell P, Izquierdo M, Pedroncelli AM, Pivonello R
Affiliated Institution / ERN: AOU Federico II - Naples ;
Condition / Disease: Cushing Disease
Publication: Pituitary v25.6 p959-970 Year: 2022 ORPHAcode / other: ORPHA96253
DOI: 10.1007/s11102-022-01280-6 Keywords: Cortisol,Cushing’s disease,Cushing’s syndrome,Hypercortisolism,Osilodrostat,Steroidogenesis inhibitor
MTG6

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)


Author(s): van Haalen FM, Kaya M, Pelsma ICM, Dekkers OM, Biermasz NR, Cannegieter SC, Huisman MV, van Vlijmen BJM, Feelders RA, Klok FA, Pereira AM, Stochholm K, Fliers E, Castinetti F, Brue T, Bertherat J, Scaroni C, Colao A, Giordano R, Druce MR, Beckers A, Spranger J, Driessens N, Maiter D, Feldt-Rasmussen U, Feelders R, Webb SM, Dattani M, Husebye E, Zilaitiene B, Gaztambide S, Gatto F, Ferone D, Persani L, Chiodini I, Höybye C, Pereira AM, Biermasz NR, Klok FA, Dekkers OM, Meijer OC, Reincke M, Vila G, Perry C, Heck A, Stancampiano MR, van de Ven A, Johannsson G, Ragnarsson O, Tóth M, Volke V, Toumba M, Canu L, Vojtková J, Al-Mrayat M, Fassnacht M, Detomas M, Karavitaki N, van der Klauw MM, Groselj U, Elenkova A, Unuane D
Affiliated Institution / ERN: Bergen Hospital Trust ; Sahlgrenska University Hospital ;
Condition / Disease: Cushings syndrome, thromboprophylaxis
Publication: Orphanet Journal of Rare Diseases v17.1 Year: 2022 ORPHAcode / other: ORPHA:96253; ORPHA647758; ORPHA189427; ORPHA314749
DOI: 10.1186/s13023-022-02320-x Keywords: Cushing’s syndrome,Endo-ERN survey,Guidelines,Hemostasis,Hypercortisolism,Thromboprophylaxis,Venous thromboembolism
MTG6

Behavioral Changes in Patients With Prader-Willi Syndrome Can Mask Severe Physical Illness


Author(s): Van Loo L, Vogels A, Rochtus A
Affiliated Institution / ERN: UZ Leuven ;
Condition / Disease: Prader Willi syndrome
Publication: JCEM Case Reports v1.1 Year: 2022 ORPHAcode / other: ORPHA739
DOI: 10.1210/jcemcr/luac034 Keywords: Prader-Willi syndrome,behavioral changes,severe underlying illness
MTG5

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


Author(s): Persani L, Cools M, Ioakim S, Faisal Ahmed S, Andonova S, Avbelj-Stefanija M, Baronio F, Bouligand J, Bruggenwirth HT, Davies JH, De Baere E, Dzivite-Krisane I, Fernandez-Alvarez P, Gheldof A, Giavoli C, Gravholt CH, Hiort O, Holterhus P, Juul A, Krausz C, Lagerstedt-Robinson K, McGowan R, Neumann U, Novelli A, Peyrassol X, Phylactou LA, Rohayem J, Touraine P, Westra D, Vezzoli V, Rossetti R
Affiliated Institution / ERN:
Condition / Disease:
Publication: Endocrine Connections Volume11: Issue 12 Year: 2022 ORPHAcode / other:
DOI: 10.1530/ec-22-0367 Keywords:
MTG7

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


Author(s): van der Kaay DCM, Rochtus A, Binder G, Kurth I, Prawitt D, Netchine I, Johannsson G, Hokken-Koelega ACS, Elbracht M, Eggermann T
Affiliated Institution / ERN:
Condition / Disease:
Publication: Endocrine Connections doi.org/10.1530/EC-22-0277 Year: 2022 ORPHAcode / other:
DOI: Keywords:
MTG5
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You have the right to be forgotten and removed completely from the Endo-ERN contact database. To request this, please contact the Endo-ERN coordinating office.

Endo-ERN Coordinating Center, Meibergdreef 9, 1105 AZ  AMSTERDAM. The Netherlands

 info@endo-ern.eu
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