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Journal Abstract Search

124 related items for PubMed ID: 33449294

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  • 4. 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
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  • 5. 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
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  • 6. 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
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  • 7. 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).
    van Haalen FM, Kaya M, Pelsma ICM, Dekkers OM, Biermasz NR, Cannegieter SC, Huisman MV, van Vlijmen BJM, Feelders RA, Klok FA, Pereira AM, Endo-ERN Cushing and Thrombosis study group.
    Orphanet J Rare Dis; 2022 May 03; 17(1):178. PubMed ID: 35505430
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  • 8. 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 01; 180(1):89-98. PubMed ID: 30407922
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  • 9. Telemedicine strategy of the European Reference Network ITHACA for the diagnosis and management of patients with rare developmental disorders.
    Smith M, Alexander E, Marcinkute R, Dan D, Rawson M, Banka S, Gavin J, Mina H, Hennessy C, Riccardi F, Radio FC, Havlovicova M, Cassina M, Emandi AC, Fradin M, Gompertz L, Nordgren A, Traberg R, Rossi M, Trimouille A, Sowmyalakshmi R, Dallapiccola B, Renieri A, Faivre L, Kerr B, Verloes A, Clayton-Smith J, Douzgou S, ERN ITHACA.
    Orphanet J Rare Dis; 2020 Apr 25; 15(1):103. PubMed ID: 32334637
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  • 10. 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 25; 10(1):37-44. PubMed ID: 33289690
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  • 11. 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 25; 183(2):141-148. PubMed ID: 32413847
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  • 12. 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 08; 14(1):169. PubMed ID: 31287000
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  • 13. Clinical practice guidelines adherence, knowledge and awareness in rare and complex connective tissue diseases across Europe: results from the first ERN ReCONNET survey.
    Talarico R, Marinello D, Bombardieri S, Burmester G, Fonseca J, Frank C, Galetti I, Hachulla E, Houssiau F, Mueller-Ladner U, Schneider M, Smith V, Turchetti G, van Laar JM, Vieira A, Cutolo M, Mosca M.
    RMD Open; 2020 Aug 08; 6(2):0. PubMed ID: 32868449
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  • 14. Genetic diagnosis of endocrine disorders in Cyprus through the Cyprus Institute of Neurology and Genetics: an ENDO-ERN Reference Center.
    Neocleous V, Fanis P, Toumba M, Skordis N, Phylactou LA.
    Orphanet J Rare Dis; 2024 Apr 18; 19(1):167. PubMed ID: 38637882
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  • 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, ERN-RND Working Group for Management of Transition.
    Neurol Sci; 2024 Mar 18; 45(3):1007-1016. PubMed ID: 37853291
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  • 16. The added value of a European Reference Network on rare and complex connective tissue and musculoskeletal diseases: insights after the first 5 years of the ERN ReCONNET.
    Talarico R, Aguilera S, Alexander T, Amoura Z, Andersen J, Arnaud L, Avcin T, Marsal Barril S, Beretta L, Bombardieri S, Bortoluzzi A, Bouillot C, Bulina I, Burmester GR, Cannizzo S, Cavagna L, Chaigne B, Cornet A, Corti P, Costedoat-Chalumeau N, Dāvidsone Z, Doria A, Fenech C, Ferraris A, Fischer-Betz R, Fonseca JE, Frank C, Gaglioti A, Galetti I, Guimarães V, Hachulla E, Holmner M, Houssiau F, Iaccarino L, Jacobsen S, Limper M, Malfait F, Mariette X, Marinello D, Martin T, Matthews L, Matucci-Cerinic M, Meyer A, Milas-Ahić J, Moinzadeh P, Montecucco C, Mouthon L, Müller-Ladner U, Nagy G, Patarata E, Pileckyte M, Pruunsild C, Rednic S, Romão VC, Schneider M, Scirè CA, Smith V, Sulli A, Tamirou F, Tani C, Taruscio D, Taulaigo AV, Tincani A, Ticciati S, Turchetti G, van Hagen PM, van Laar JM, Viera A, de Vries-Bouwstra JK, Zschocke J, Cutolo M, Mosca M.
    Clin Exp Rheumatol; 2022 May 18; 40 Suppl 134(5):3-11. PubMed ID: 35349419
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  • 17. Sickle cell disease landscape and challenges in the EU: the ERN-EuroBloodNet perspective.
    Mañú Pereira MDM, Colombatti R, Alvarez F, Bartolucci P, Bento C, Brunetta AL, Cela E, Christou S, Collado A, de Montalembert M, Dedeken L, Fenaux P, Galacteros F, Glenthøj A, Gutiérrez Valle V, Kattamis A, Kunz J, Lobitz S, McMahon C, Pellegrini M, Reidel S, Russo G, Santos Freire M, van Beers E, Kountouris P, Gulbis B.
    Lancet Haematol; 2023 Aug 18; 10(8):e687-e694. PubMed ID: 37451300
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  • 18. RarERN Path: a methodology towards the optimisation of patients' care pathways in rare and complex diseases developed within the European Reference Networks.
    Talarico R, Cannizzo S, Lorenzoni V, Marinello D, Palla I, Pirri S, Ticciati S, Trieste L, Triulzi I, Terol E, Bucher A, Turchetti G.
    Orphanet J Rare Dis; 2020 Dec 14; 15(1):347. PubMed ID: 33317578
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  • 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, MTG6 Pituitary of Endo-ERN.
    Endocr Connect; 2023 Jan 01; 12(1):. PubMed ID: 36327151
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  • 20. [European Reference Network for Rare Hepatological Diseases (ERN RARE-LIVER)].
    Schulz L, Sebode M, Schramm C, Lohse AW.
    Internist (Berl); 2021 Apr 01; 62(4):441-448. PubMed ID: 33687527
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