143 related articles for article (PubMed ID: 33534110)
1. Patients with rare endocrine conditions have corresponding views on unmet needs in clinical research.
de Graaf JP; de Vries F; Dirkson A; Hiort O; Pereira AM; Korbonits M; Cools M;
Endocrine; 2021 Mar; 71(3):561-568. PubMed ID: 33534110
[TBL] [Abstract][Full Text] [Related]
2. Perspectives of the European Society of Endocrinology (ESE) and the European Society of Paediatric Endocrinology (ESPE) on rare endocrine disease.
Reincke M; Hokken-Koelega A
Endocrine; 2021 Mar; 71(3):539-541. PubMed ID: 33740222
[TBL] [Abstract][Full Text] [Related]
3. Introduction to Endo-ERN-scope and mission.
Pereira AM; Hiort O
Endocrine; 2021 Mar; 71(3):537-538. PubMed ID: 33449294
[TBL] [Abstract][Full Text] [Related]
4. Supporting international networks through platforms for standardised data collection-the European Registries for Rare Endocrine Conditions (EuRRECa) model.
Ali SR; Bryce J; Smythe C; Hytiris M; Priego AL; Appelman-Dijkstra NM; Ahmed SF
Endocrine; 2021 Mar; 71(3):555-560. PubMed ID: 33512655
[TBL] [Abstract][Full Text] [Related]
5. An overview of clinical activities in Endo-ERN: the need for alignment of future network criteria.
de Vries F; Bruin M; Cersosimo A; van Beuzekom CN; Ahmed SF; Peeters RP; Biermasz NR; Hiort O; Pereira AM
Eur J Endocrinol; 2020 Aug; 183(2):141-148. PubMed ID: 32413847
[TBL] [Abstract][Full Text] [Related]
6. CPMS-improving patient care in Europe via virtual case discussions.
Mönig I; Steenvoorden D; de Graaf JP; Ahmed SF; Taruscio D; Beun JG; Johannsen TH; Juul A; Hiort O; Pereira AM
Endocrine; 2021 Mar; 71(3):549-554. PubMed ID: 33528763
[TBL] [Abstract][Full Text] [Related]
7. The current landscape of European registries for rare endocrine conditions.
Ali SR; Bryce J; Cools M; Korbonits M; Beun JG; Taruscio D; Danne T; Dattani M; Dekkers OM; Linglart A; Netchine I; Nordenstrom A; Patocs A; Persani L; Reisch N; Smyth A; Sumnik Z; Visser WE; Hiort O; Pereira AM; Ahmed SF
Eur J Endocrinol; 2019 Jan; 180(1):89-98. PubMed ID: 30407922
[TBL] [Abstract][Full Text] [Related]
8. Educational and knowledge gaps within the European reference network on rare endocrine conditions.
Iotova V; Schalin-Jäntti C; Bruegmann P; Broesamle M; Bratina N; Tillmann V; Hiort O; Pereira AM
Endocr Connect; 2021 Jan; 10(1):37-44. PubMed ID: 33289690
[TBL] [Abstract][Full Text] [Related]
9. ERN BOND: The key European network leveraging diagnosis, research, and treatment for rare bone conditions.
Casareto L; Appelman-Dijkstra NM; Brandi ML; Chapurlat R; Cormier-Daire V; Hamdy NAT; Heath KE; Horn J; Mantovani G; Mohnike K; Sousa SB; Travessa A; Wekre LL; Zillikens MC; Sangiorgi L;
Eur J Med Genet; 2024 Apr; 68():104916. PubMed ID: 38296035
[TBL] [Abstract][Full Text] [Related]
10. Patients' perception on the quality of care for multiple endocrine neoplasia disorders in Europe: an online survey from a patient support group.
Drewitz KP; Grey J; Brügmann P; Pichl J; Sammarco M; Aarts M; van Genechten D; Brandi ML; Schaaf L
Endocrine; 2021 Mar; 71(3):634-640. PubMed ID: 33537957
[TBL] [Abstract][Full Text] [Related]
11. EndoERN patient survey on their perception of health care experience and of unmet needs for rare endocrine diseases.
Webb SM; Kristensen J; Vitali D; van Klink S; van Beuzekom C; Santos A; Nordenström A
Endocrine; 2021 Mar; 71(3):569-577. PubMed ID: 33544353
[TBL] [Abstract][Full Text] [Related]
12. Access to patient oriented information-a baseline Endo-ERN survey among patients with rare endocrine disorders.
Iotova V; Schalin-Jäntti C; Bruegmann P; Broesamle M; De Graaf J; Bratina N; Tillmann V; Pereira AM; Hiort O
Endocrine; 2021 Mar; 71(3):542-548. PubMed ID: 33599944
[TBL] [Abstract][Full Text] [Related]
13. Mobile app requirements for patients with rare liver diseases: A single center survey for the ERN RARE-LIVER.
Rüther DF; Sebode M; Lohse AW; Wernicke S; Böttinger E; Casar C; Braun F; Schramm C
Clin Res Hepatol Gastroenterol; 2021 Nov; 45(6):101760. PubMed ID: 34325014
[TBL] [Abstract][Full Text] [Related]
14. Electronic reporting of rare endocrine conditions within a clinical network: results from the EuRRECa project.
Ali SR; Bryce J; Priego-Zurita AL; Cherenko M; Smythe C; de Rooij TM; Cools M; Danne T; Katugampola H; Dekkers OM; Hiort O; Linglart A; Netchine I; Nordenstrom A; Attila P; Persani L; Reisch N; Smyth A; Sumnik Z; Taruscio D; Visser WE; Pereira AM; Appelman-Dijkstra NM; Ahmed SF
Endocr Connect; 2023 Dec; 12(12):. PubMed ID: 37902973
[TBL] [Abstract][Full Text] [Related]
15. Child-to-adult transition: a survey of current practices within the European Reference Network for Rare Neurological Diseases (ERN-RND).
Nanetti L; Kearney M; Boesch S; Stovickova L; Ortigoza-Escobar JD; Macaya A; Gomez-Andres D; Roze E; Molnar MJ; Wolf NI; Darling A; Vasco G; Bertini E; Indelicato E; Neubauer D; Haack TB; Sagi JC; Danti FR; Sival D; Zanni G; Kolk A; Boespflug-Tanguy O; Schols L; van de Warrenburg B; Vidailhet M; Willemsen MA; Buizer AI; Orzes E; Ripp S; Reinhard C; Moroni I; Mariotti C;
Neurol Sci; 2024 Mar; 45(3):1007-1016. PubMed ID: 37853291
[TBL] [Abstract][Full Text] [Related]
16. The experience of diagnosis announcement in rare endocrine diseases: A survey of the French FIRENDO network.
Rahabi H; Givony M; Demaret B; Albarel F; Aubron MR; Bartès B; Bernard L; Abdoul H; Bouazza N; Brun P; Drui D; Dujardin V; Lançon C; Malivoir S; Netchine I; Perrotin B; Picard V; Reynaud R; Ribeiro M; Tardy Guidollet V; Victor A; Bertherat J; Colin C; Brue T
Ann Endocrinol (Paris); 2024 Feb; 85(1):27-35. PubMed ID: 37951412
[TBL] [Abstract][Full Text] [Related]
17. Position statement on access to care in rare liver diseases: advancements of the European reference network (ERN) RARE-LIVER.
Bernts LHP; Jones DEJ; Kaatee MM; Lohse AW; Schramm C; Sturm E; Drenth JPH
Orphanet J Rare Dis; 2019 Jul; 14(1):169. PubMed ID: 31287000
[TBL] [Abstract][Full Text] [Related]
18. Health-related quality of life in early breast cancer.
Groenvold M
Dan Med Bull; 2010 Sep; 57(9):B4184. PubMed ID: 20816024
[TBL] [Abstract][Full Text] [Related]
19. 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; Faisal Ahmed S; van Furth WR; Charmandari E; Hiort O; Pereira AM; Dattani M; Vitali D; de Graaf JP; Biermasz NR;
Endocr Connect; 2023 Jan; 12(1):. PubMed ID: 36327151
[TBL] [Abstract][Full Text] [Related]
20. Research priorities for rare neurological diseases: a representative view of patient representatives and healthcare professionals from the European Reference Network for Rare Neurological Diseases.
Post AEM; Klockgether T; Landwehrmeyer GB; Pandolfo M; Arnesen A; Reinhard C; Graessner H
Orphanet J Rare Dis; 2021 Mar; 16(1):135. PubMed ID: 33736655
[TBL] [Abstract][Full Text] [Related]
[Next] [New Search]