Endo-ERN Studies

Endo-ERN Studies

Filter list of studies

TopicStudy nameID(s) / DOIMTG(s)StatusOrpha / ICD11Link
HypertensionOmics Signature in the Diagnosis of Hypertension (ENSAT-HT)
  • NCT02772315
  • P17-284/2018-4231
14
  • not recruiting
  • ORPHA573163
  • ORPHA97253
  • ORPHA181415
  • ORPHA99893
Adrenal TumoursENSAT registry-based randomized clinical trials for adrenocortical carcinoma
  • 10.1530/EJE-20-0800
1
  • concluded
  • ORPHA1501
Central Precocious PubertyPathogenic and low-frequency variants in children with Central Precocious Puberty
  • 10.3389/fendo.2021.745048
6
  • Completed
  • ORPHA759
Congenital HyperinsulismClinical characteristics of children with Congenital Hyperinsulinism: Results from the European Registries for Rare Endocrine Conditions (EuRRECa) Project
  • 10.1159/000518849
3
  • Presented at ESPE conference
  • ORPHA657
Cushing's DiseaseComplicushing: Cushing's Disease Complications
  • NCT02568982
6
  • completed
  • ORPHA96253
Cushing's SyndromeThe etiology and extent of impaired quality of life, fatigue and cognitive, affective and emotional dysfunction in patients with Cushing’s syndrome
  • BRAIN
16
  • recruiting
  • ORPHA553
Differentiated Thyroid CarcinomaLong term effects of radioiodine treatment in suvivors
  • 10.1089/thy.2019.0560
8
  • concluded
  • ORPHA146
Growth Hormone DeficiencySafety and effectiveness of replacement with biosimilar growth hormone in adults with growth hormone deficiency: results from an international, post-marketing surveillance study (PATRO Adults)
  • 10.1007/s11102-021-01139-2
5
  • ongoing
  • ORPHA101957
HypoparathyroidismPARADIGHM (Physicians Advancing Disease Knowledge in Hypoparathyroidism): A Registry for Patients With Chronic Hypoparathyroidism
  • NCT01922440
2
  • Recruiting
  • ORPHA181405
MEN1MEN 1 data dase / Impact of Delay in Diagnosis in Outcomes in MEN1: Results From the Dutch MEN1 Study Group
  • 10.1210/clinem/dgaa800
4
  • concluded
  • ORPHA652
ObesityOberar : Rare Obesity Cohorts With Food Behavioral Disorders : Better Diagnosis for Better Treatment
  • NCT04604626
5
  • recruiting
  • ORPHA739
SARS-CoV-2, AdrenalAdrenal tropism of SARS-CoV-2 and adrenal findings in a post-mortem case series of patients with severe fatal COVID-19
  • 10.1038/s41467-022-29145-3
1
  • Ongoing
  • XA0NE9
Thyroid cancerLow iodine diet study (LID)
  • 10.1210/clinem/dgab691
8
  • published
  • ORPHA146
Thyroid carcinomaTHETA: cycling from hypoThyroidism to Hyperthyroidism during Early treatment of differentiated Thyroid carcinomA
  • Trial NL7228 (NTR7427)
8
  • ongoing
  • ORPHA146
Type 1 DiabetesAn Innovative Approach Towards Understanding and Arresting Type 1 Diabetes (INNODIA) (INNODIA)
  • NCT03936634
3
  • recruiting
  • ORPHA181371
Type 1 DiabetesDiabetes-related antibody-testing is a valuable screening tool for diagnosing monogenic diabetes - a survey from the worldwide SWEET registry
  • NCT04427189
3
  • ongoing
  • ORPHA181371
X-linked HypophosphatemiaRegistry for Patients With X-linked Hypophosphatemia (XLH Registry)
  • NCT03193476
2
  • recruiting
  • ORPHA89936
AcromegalyInternational Multicentre Validation Study of SAGIT® Instrument in Acromegaly
  • NCT02539927
6
  • concluded
  • ORPHA963
X-linked hypophosphataemiaPrevalence of overweight and obesity in children with X-linked hypophosphatemia
  • 10.1530/EC-19-0481
25
  • concluded
  • ORPHA89936
46,XY DSDPuberty in Females with PAIS
  • Study ID 201402_GGF
7
  • concluded
  • ORPHA90797
46,XY DSDSF1 next
  • Study ID 201810_GS
7
  • ongoing
  • ORPHA325351
AchondroplasiaLifetime Impact of Achondroplasia Study in Europe-LIAISE, (NCT03449368)
  • NCT03449368
5ERN BOND
  • concluded
  • ORPHA15
AcromegalyA European observational study in patients with uncontrolled acromegaly who are being treated with long acting pasireotide
  • 10.1530/endoabs.56.GP8
6
  • concluded
  • ORPHA963
AcromegalyLAS. Liège Acromegaly Survey. A large prospective observational registry of patients with acromegaly.
  • 10.1530/ERC-17-0253
6
  • concluded
  • ORPHA963
AcromegalyDevelopment of ACRODAT®, a new software medical device to assess disease activity in patients with acromegaly.
  • 10.1007/s11102-017-0835-5
6
  • concluded
  • ORPHA963
AcromegalyEOLIA
  • CSMS995BFR13
6
  • concluded
  • ORPHA963
Adrenal InsufficiencyPrimary Adrenal Insufficiency in Childhood: Data From a Large Nationwide Cohort/ A National Multicentre study on the frequence of adrenal crisis in children with adrenal insufficiency <6 years of age
  • 10.1210/clinem/dgaa881
1
  • concluded
  • ORPHA101958
Adrenal InsufficiencyA National Multi-Centre study on etiology and long term outcome of Primary Adrenal Insufficiency in children
  • 10.1186/1472-6823-14-40
1
  • concluded
  • ORPHA101958
  • ORPHA418
Adrenal tumoursENSAT registry study
  • ENS@T
1
  • ongoing
  • ORPHA100091
Adrenal TumoursSERENDIPITY - Structured Evaluation of adRENal Tumors Discovered Incidentally - Prospectively Investigating the Testing Yield (SERENDIPITY)
  • NCT02324647
1
  • ongoing
  • ORPHA100091
Adrenal TumoursStructured Evaluation of adRENal tumors Discovered Incidentally - Prospectively Investigating the Testing Yield- Serendipity Protocol NTR 4799
  • Serendipity Protocol NTR 4799
1
  • ORPHA100091
Androgen Insensitivity SyndromeIdentification of selective androgen receptor co-regulators on the basis of an in vitro model of androgen insensitivity syndrome
  • HO 6028/2-1
7
  • concluded
  • ORPHA754
Chromosomal DSDFollow-up of pubertal development and fertility in boys who underwent testicular tissue biopsy for fertility preservation7
  • ongoing
  • ORPHA325546
Chronic Adrenal InsufficiencyA European Post-Authorisation Observational Study (Registry) of Patients With Chronic Adrenal Insufficiency (AI) - EU-AIR
  • NCT01661387
1
  • Terminated
  • ORPHA101959
Chronic diseaseCHRODIS PLUS,
  • CHRODIS+
  • ongoing
  • 5A14
Congenital Adrenal HyperplasiaInternational practice of corticosteroid replacement therapy in congenital adrenal hyperplasia: data from the I-CAH registry
  • 10.1530/eje-20-1249
  • PMID: 33460392
1
  • concluded
  • ORPHA418
Congenital HyperinsulinismMaximising the Utilisation of the Hyperinsulinism Global Registry (HIGR) [Max HIGR]
  • MDBR-21-102-CHI
3
  • ongoing
  • ORPHA657
Congential HyperinsulinismClinical characteristics of children with Congenital Hyperinsulinism: Results from the European Registries for Rare Endocrine Conditions (EuRRECA)Project
  • ESPE & EuRRECa programme (https://eurreca.net/)
3
  • reporting
  • ORPHA657
Cushing DiseaseNon-interventional Study for the Generation of Long Term Safety and Efficacy Data of Pasireotide s.c. in Patients With Cushing's Disease (Post-Authorization Safety Study) (SOM2030)
  • NCT02310269
6
  • ongoing
  • ORPHA96253
Cushing SyndromeThe etiology and extent of impaired quality of life, fatigue and cognitive, affective and emotional dysfunction in patients with Cushing’s syndrome
  • NCT03211624
16
  • recruiting
  • ORPHA553
Diabetes MellitusPersonalized medicine in diabetes: design and characterization of a high-performance genotyping tool that allows the classification of different diabetes
  • PID2019-107513RB-I00
3
  • ongoing
  • 5A14
Differences of Sex DevelopmentGonadectomy in conditions affecting sex development: a registry-based cohort study
  • 10.1530/eje-20-1058
  • PMID: 33780351
7
  • concluded
  • ORPHA90771
Differentiated Thyroid CarcinomaLong-Term Effects of Radioiodine Treatment on Female Fertility in Survivors of Childhood Differentiated Thyroid Carcinoma
  • 10.1089/thy.2019.0560
8
  • concluded
  • ORPHA146
Differentiated Thyroid CarcinomaLow iodine diet study (LID)
  • 10.1210/clinem/dgab691
8
  • concluded
  • ORPHA146
Differentiated Thyroid CarcinomaRIFTOS MKI - Radioactive Iodine reFractory Asymptomatic Patients in Differentiated Thyroid Cancer - an Observational Study to Assess the Use of Multikinase Inhibitors
  • NCT02303444
8
  • concluded
  • ORPHA146
Genetic Short StatureNSEuroNet database
  • NSEuroNet
5
  • ongoing
  • ORPHA98733
Hormonal Therapy in Transsexual PersonsA European Network for the Investigation of Gender Incongruence (ENIGI)
  • NCT01072825
7
  • concluded
  • HA6Z
Hypophosphatasia (HPP)An Observational, Longitudinal, Prospective, Long-Term Registry Of Patients With Hypophosphatasia (HPP)
  • NCT02306720
2ERN BOND
  • ongoing
  • ORPHA436
Hypopituitarism, Histiocytosis X, Sarcoidosis, Hypophysitis, Idiopatic Diabetes InsipidusHypopituitarism ENEA Rare etiologies Observational Study (HEROS)
  • HEROS
6
  • concluded
  • ORPHA101957
  • ORPHA389
  • ORPHA797
  • ORPHA95506
  • ORPHA95626
MEN1MEN 1 data dase / Impact of Delay in Diagnosis in Outcomes in MEN1: Results From the Dutch MEN1 Study Group
  • DutchMEN study group (DMSG)/10.1210/clinem/dgaa800
4
  • concluded
  • ORPHA652
Neuroendocrine TumorsDevelopment and Progression of Carcinoid Heart Disease in a Cohort of Adult Patients With Neuroendocrine Tumors Carcinoid Heart Disease (CHD): An Observational French Multi-Centre Cohort Study CRUSOE - NETs (CaRdiac UltraSonic OutcomEs - NETs)
  • NCT03498040
4
  • ongoing
  • ORPHA877
Non-Syndromic Pheochromocytoma/ParagangliomaA Multicenter Epidemiological Study on Second Malignancy in Non-Syndromic Pheochromocytoma/Paraganglioma Patients in Italy
  • 10.3390/cancers13225831
1
  • concluded
  • ORPHA573163
Pituitary AdenomaThe Molecular Registry of Pituitary Adenomas (REMAH): A bet of Spanish Endocrinology for the future of individualized medicine and translational research.
  • 10.1016/j.endonu.2016.03.001.
6
  • concluded
  • ORPHA99408
Prader-Willi SyndromeEfficacy and Safety of Norditropin® (Somatropin) in Children With Prader-Willi Syndrome (PWS)
  • NCT00705172
5
  • concluded
  • ORPHA739
Prader-Willi SyndromeProlactin levels in PWS
  • 10.3390/jcm10163613
5
  • concluded
  • ORPHA739
Primary Adrenal InsufficiencyOptimizing mineralocorticoid replacement therapy in patients with congenital adrenal hyperplasia and Addison's disease
  • 10.1530/endoabs.63.GP197
1
  • concluded
  • ORPHA418
  • ORPHA85138
Primary AldosteronismCirculating microRNAs in primary aldosteronism
  • 10.1530/endoabs.63.GP198
1
  • concluded
  • ORPHA181415
Primary Aldosteronism, Pheochromocytoma/Paraganglioma, Cushing SyndromeEnsat-HT
  • ens@t-ht
  • European Union’s Horizon 2020 - grant agreement No 633983
16
  • ongoing
  • ORPHA181415
  • ORPHA573163
  • ORPHA553
Rare Endocrine Conditions, COVID-19COVID-19 Infections In People With Rare Endocrine Conditions
  • 10.1530/endoabs.73.OC14.5
12345678
  • completed
  • ORPHA97978
Rare genetic endocrine disordersGenetic testing in inherited endocrine disorders: joint position paper of the European reference network on rare endocrine conditions (Endo-ERN)
  • 10.1186/s13023-020-01420-w
12345678
  • concluded
  • ORPHA97978
Somatropin treatmentLong-term safety and efficacy of Omnitrope®, a somatropin biosimilar, in children requiring growth hormone treatment: PATRO Children study
  • PMCID: PMC3593298
5
  • concluded
  • ORPHA631
  • ORPHA739
  • ORPHA881
Thyroid AutoimmunityImpact of thyroid autoimmunity on cumulative delivery rates in in vitro fertilization/intracytoplasmic sperm injection patients
  • 10.1016/j.fertnstert.2016.03.011
8
  • concluded
  • 5A03.2
  • 5A02.0
Thyroid carcinomaValidation of the diagnostic accuracy of the electronic nose in the detection of thyroid cancer.
  • NCT04883294
8
  • ongoing
  • ORPHA146
Thyroid NoduleRisk of malignancy of the thyroid nodule evaluated by scintigraphy: a single centre retrospective study
  • 10.1530/endoabs.64.009
8
  • concluded
  • ORPHA146
Thyroid  AutoimmunityImpact of Thyroid autoimmunity on Fertility outcome in intrauterine insemination (IUI) patients
  • 10.1093/humrep/dex033
8
  • concluded
  • 5A03.2
  • 5A02.0
X-linked hypophosphataemiaPrevalence of overweight and obesity in children with X-linked hypophosphatemia
  • 10.1530/EC-19-0481
2
  • concluded
  • ORPHA89936
TopicStudy nameID(s) / DOIMTG(s)StatusOrpha / ICD11Link