Endo-ERN Studies
| Topic | Study name | ID(s) / DOI | MTG(s) | Status | Orpha / ICD11 | Link |
|---|---|---|---|---|---|---|
| Hypertension | Omics Signature in the Diagnosis of Hypertension (ENSAT-HT) |
| 14 |
|
| |
| Adrenal Tumours | ENSAT registry-based randomized clinical trials for adrenocortical carcinoma |
| 1 |
|
| |
| Central Precocious Puberty | Pathogenic and low-frequency variants in children with Central Precocious Puberty |
| 6 |
|
| |
| Congenital Hyperinsulism | Clinical characteristics of children with Congenital Hyperinsulinism: Results from the European Registries for Rare Endocrine Conditions (EuRRECa) Project |
| 3 |
|
| |
| Cushing's Disease | Complicushing: Cushing's Disease Complications |
| 6 |
|
| |
| Cushing's Syndrome | The etiology and extent of impaired quality of life, fatigue and cognitive, affective and emotional dysfunction in patients with Cushing’s syndrome |
| 16 |
|
| |
| Differentiated Thyroid Carcinoma | Long term effects of radioiodine treatment in suvivors |
| 8 |
|
| |
| Growth Hormone Deficiency | Safety and effectiveness of replacement with biosimilar growth hormone in adults with growth hormone deficiency: results from an international, post-marketing surveillance study (PATRO Adults) |
| 5 |
|
| |
| Hypoparathyroidism | PARADIGHM (Physicians Advancing Disease Knowledge in Hypoparathyroidism): A Registry for Patients With Chronic Hypoparathyroidism |
| 2 |
|
| |
| MEN1 | MEN 1 data dase / Impact of Delay in Diagnosis in Outcomes in MEN1: Results From the Dutch MEN1 Study Group |
| 4 |
|
| |
| Obesity | Oberar : Rare Obesity Cohorts With Food Behavioral Disorders : Better Diagnosis for Better Treatment |
| 5 |
|
| |
| SARS-CoV-2, Adrenal | Adrenal tropism of SARS-CoV-2 and adrenal findings in a post-mortem case series of patients with severe fatal COVID-19 |
| 1 |
|
| |
| Thyroid cancer | Low iodine diet study (LID) |
| 8 |
|
| |
| Thyroid carcinoma | THETA: cycling from hypoThyroidism to Hyperthyroidism during Early treatment of differentiated Thyroid carcinomA |
| 8 |
|
| |
| Type 1 Diabetes | An Innovative Approach Towards Understanding and Arresting Type 1 Diabetes (INNODIA) (INNODIA) |
| 3 |
|
| |
| Type 1 Diabetes | Diabetes-related antibody-testing is a valuable screening tool for diagnosing monogenic diabetes - a survey from the worldwide SWEET registry |
| 3 |
|
| |
| X-linked Hypophosphatemia | Registry for Patients With X-linked Hypophosphatemia (XLH Registry) |
| 2 |
|
| |
| Acromegaly | International Multicentre Validation Study of SAGIT® Instrument in Acromegaly |
| 6 |
|
| |
| X-linked hypophosphataemia | Prevalence of overweight and obesity in children with X-linked hypophosphatemia |
| 25 |
|
| |
| 46,XY DSD | Puberty in Females with PAIS |
| 7 |
|
| |
| 46,XY DSD | SF1 next |
| 7 |
|
| |
| Achondroplasia | Lifetime Impact of Achondroplasia Study in Europe-LIAISE, (NCT03449368) |
| 5ERN BOND |
|
| |
| Acromegaly | A European observational study in patients with uncontrolled acromegaly who are being treated with long acting pasireotide |
| 6 |
|
| |
| Acromegaly | LAS. Liège Acromegaly Survey. A large prospective observational registry of patients with acromegaly. |
| 6 |
|
| |
| Acromegaly | Development of ACRODAT®, a new software medical device to assess disease activity in patients with acromegaly. |
| 6 |
|
| |
| Acromegaly | EOLIA |
| 6 |
|
| |
| Adrenal Insufficiency | Primary 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 |
| 1 |
|
| |
| Adrenal Insufficiency | A National Multi-Centre study on etiology and long term outcome of Primary Adrenal Insufficiency in children |
| 1 |
|
| |
| Adrenal tumours | ENSAT registry study |
| 1 |
|
| |
| Adrenal Tumours | SERENDIPITY - Structured Evaluation of adRENal Tumors Discovered Incidentally - Prospectively Investigating the Testing Yield (SERENDIPITY) |
| 1 |
|
| |
| Adrenal Tumours | Structured Evaluation of adRENal tumors Discovered Incidentally - Prospectively Investigating the Testing Yield- Serendipity Protocol NTR 4799 |
| 1 |
| ||
| Androgen Insensitivity Syndrome | Identification of selective androgen receptor co-regulators on the basis of an in vitro model of androgen insensitivity syndrome |
| 7 |
|
| |
| Chromosomal DSD | Follow-up of pubertal development and fertility in boys who underwent testicular tissue biopsy for fertility preservation | 7 |
|
| ||
| Chronic Adrenal Insufficiency | A European Post-Authorisation Observational Study (Registry) of Patients With Chronic Adrenal Insufficiency (AI) - EU-AIR |
| 1 |
|
| |
| Chronic disease | CHRODIS PLUS, |
|
|
| ||
| Congenital Adrenal Hyperplasia | International practice of corticosteroid replacement therapy in congenital adrenal hyperplasia: data from the I-CAH registry |
| 1 |
|
| |
| Congenital Hyperinsulinism | Maximising the Utilisation of the Hyperinsulinism Global Registry (HIGR) [Max HIGR] |
| 3 |
|
| |
| Congential Hyperinsulinism | Clinical characteristics of children with Congenital Hyperinsulinism: Results from the European Registries for Rare Endocrine Conditions (EuRRECA)Project |
| 3 |
|
| |
| Cushing Disease | Non-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) |
| 6 |
|
| |
| Cushing Syndrome | The etiology and extent of impaired quality of life, fatigue and cognitive, affective and emotional dysfunction in patients with Cushing’s syndrome |
| 16 |
|
| |
| Diabetes Mellitus | Personalized medicine in diabetes: design and characterization of a high-performance genotyping tool that allows the classification of different diabetes |
| 3 |
|
| |
| Differences of Sex Development | Gonadectomy in conditions affecting sex development: a registry-based cohort study |
| 7 |
|
| |
| Differentiated Thyroid Carcinoma | Long-Term Effects of Radioiodine Treatment on Female Fertility in Survivors of Childhood Differentiated Thyroid Carcinoma |
| 8 |
|
| |
| Differentiated Thyroid Carcinoma | Low iodine diet study (LID) |
| 8 |
|
| |
| Differentiated Thyroid Carcinoma | RIFTOS MKI - Radioactive Iodine reFractory Asymptomatic Patients in Differentiated Thyroid Cancer - an Observational Study to Assess the Use of Multikinase Inhibitors |
| 8 |
|
| |
| Genetic Short Stature | NSEuroNet database |
| 5 |
|
| |
| Hormonal Therapy in Transsexual Persons | A European Network for the Investigation of Gender Incongruence (ENIGI) |
| 7 |
|
| |
| Hypophosphatasia (HPP) | An Observational, Longitudinal, Prospective, Long-Term Registry Of Patients With Hypophosphatasia (HPP) |
| 2ERN BOND |
|
| |
| Hypopituitarism, Histiocytosis X, Sarcoidosis, Hypophysitis, Idiopatic Diabetes Insipidus | Hypopituitarism ENEA Rare etiologies Observational Study (HEROS) |
| 6 |
|
| |
| MEN1 | MEN 1 data dase / Impact of Delay in Diagnosis in Outcomes in MEN1: Results From the Dutch MEN1 Study Group |
| 4 |
|
| |
| Neuroendocrine Tumors | Development 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) |
| 4 |
|
| |
| Non-Syndromic Pheochromocytoma/Paraganglioma | A Multicenter Epidemiological Study on Second Malignancy in Non-Syndromic Pheochromocytoma/Paraganglioma Patients in Italy |
| 1 |
|
| |
| Pituitary Adenoma | The Molecular Registry of Pituitary Adenomas (REMAH): A bet of Spanish Endocrinology for the future of individualized medicine and translational research. |
| 6 |
|
| |
| Prader-Willi Syndrome | Efficacy and Safety of Norditropin® (Somatropin) in Children With Prader-Willi Syndrome (PWS) |
| 5 |
|
| |
| Prader-Willi Syndrome | Prolactin levels in PWS |
| 5 |
|
| |
| Primary Adrenal Insufficiency | Optimizing mineralocorticoid replacement therapy in patients with congenital adrenal hyperplasia and Addison's disease |
| 1 |
|
| |
| Primary Aldosteronism | Circulating microRNAs in primary aldosteronism |
| 1 |
|
| |
| Primary Aldosteronism, Pheochromocytoma/Paraganglioma, Cushing Syndrome | Ensat-HT |
| 16 |
|
| |
| Rare Endocrine Conditions, COVID-19 | COVID-19 Infections In People With Rare Endocrine Conditions |
| 12345678 |
|
| |
| Rare genetic endocrine disorders | Genetic testing in inherited endocrine disorders: joint position paper of the European reference network on rare endocrine conditions (Endo-ERN) |
| 12345678 |
|
| |
| Somatropin treatment | Long-term safety and efficacy of Omnitrope®, a somatropin biosimilar, in children requiring growth hormone treatment: PATRO Children study |
| 5 |
|
| |
| Thyroid Autoimmunity | Impact of thyroid autoimmunity on cumulative delivery rates in in vitro fertilization/intracytoplasmic sperm injection patients |
| 8 |
|
| |
| Thyroid carcinoma | Validation of the diagnostic accuracy of the electronic nose in the detection of thyroid cancer. |
| 8 |
|
| |
| Thyroid Nodule | Risk of malignancy of the thyroid nodule evaluated by scintigraphy: a single centre retrospective study |
| 8 |
|
| |
| Thyroid Autoimmunity | Impact of Thyroid autoimmunity on Fertility outcome in intrauterine insemination (IUI) patients |
| 8 |
|
| |
| X-linked hypophosphataemia | Prevalence of overweight and obesity in children with X-linked hypophosphatemia |
| 2 |
|
| |
| Topic | Study name | ID(s) / DOI | MTG(s) | Status | Orpha / ICD11 | Link |
Last update: June 2, 2022 on 15:39