185 related articles for article (PubMed ID: 34715889)
1. RaDiCo, the French national research program on rare disease cohorts.
Amselem S; Gueguen S; Weinbach J; Clement A; Landais P;
Orphanet J Rare Dis; 2021 Oct; 16(1):454. PubMed ID: 34715889
[TBL] [Abstract][Full Text] [Related]
2. Domain-Specific Common Data Elements for Rare Disease Registration: Conceptual Approach of a European Joint Initiative Toward Semantic Interoperability in Rare Disease Research.
Abaza H; Kadioglu D; Martin S; Papadopoulou A; Dos Santos Vieira B; Schaefer F; Storf H
JMIR Med Inform; 2022 May; 10(5):e32158. PubMed ID: 35594066
[TBL] [Abstract][Full Text] [Related]
3. Folic acid supplementation and malaria susceptibility and severity among people taking antifolate antimalarial drugs in endemic areas.
Crider K; Williams J; Qi YP; Gutman J; Yeung L; Mai C; Finkelstain J; Mehta S; Pons-Duran C; Menéndez C; Moraleda C; Rogers L; Daniels K; Green P
Cochrane Database Syst Rev; 2022 Feb; 2(2022):. PubMed ID: 36321557
[TBL] [Abstract][Full Text] [Related]
4. A sustainable solution for the activities of the European network for surveillance of congenital anomalies: EUROCAT as part of the EU Platform on Rare Diseases Registration.
Kinsner-Ovaskainen A; Lanzoni M; Garne E; Loane M; Morris J; Neville A; Nicholl C; Rankin J; Rissmann A; Tucker D; Martin S
Eur J Med Genet; 2018 Sep; 61(9):513-517. PubMed ID: 29597096
[TBL] [Abstract][Full Text] [Related]
5. The pooling of manpower and resources through the establishment of European reference networks and rare disease patient registries is a necessary area of collaboration for rare renal disorders.
Parker S
Nephrol Dial Transplant; 2014 Sep; 29 Suppl 4():iv9-14. PubMed ID: 25165190
[TBL] [Abstract][Full Text] [Related]
6. A model for the European platform for rare disease registries.
Vittozzi L; Gainotti S; Mollo E; Donati C; Taruscio D
Public Health Genomics; 2013; 16(6):299-304. PubMed ID: 24503590
[TBL] [Abstract][Full Text] [Related]
7. Mortality and Morbidity Effects of Long-Term Exposure to Low-Level PM
Brunekreef B; Strak M; Chen J; Andersen ZJ; Atkinson R; Bauwelinck M; Bellander T; Boutron MC; Brandt J; Carey I; Cesaroni G; Forastiere F; Fecht D; Gulliver J; Hertel O; Hoffmann B; de Hoogh K; Houthuijs D; Hvidtfeldt U; Janssen N; Jorgensen J; Katsouyanni K; Ketzel M; Klompmaker J; Hjertager Krog N; Liu S; Ljungman P; Mehta A; Nagel G; Oftedal B; Pershagen G; Peters A; Raaschou-Nielsen O; Renzi M; Rodopoulou S; Samoli E; Schwarze P; Sigsgaard T; Stafoggia M; Vienneau D; Weinmayr G; Wolf K; Hoek G
Res Rep Health Eff Inst; 2021 Sep; 2021(208):1-127. PubMed ID: 36106702
[TBL] [Abstract][Full Text] [Related]
8. A methodology for a minimum data set for rare diseases to support national centers of excellence for healthcare and research.
Choquet R; Maaroufi M; de Carrara A; Messiaen C; Luigi E; Landais P
J Am Med Inform Assoc; 2015 Jan; 22(1):76-85. PubMed ID: 25038198
[TBL] [Abstract][Full Text] [Related]
9. Rare Diseases in Europe: from a Wide to a Local Perspective.
Baldovino S; Moliner AM; Taruscio D; Daina E; Roccatello D
Isr Med Assoc J; 2016 Jun; 18(6):359-63. PubMed ID: 27468531
[TBL] [Abstract][Full Text] [Related]
10. Overview of patients' cohorts in the French National rare disease registry.
Pichon T; Messiaen C; Soussand L; Angin C; Sandrin A; Elarouci N; Jannot AS;
Orphanet J Rare Dis; 2023 Jul; 18(1):176. PubMed ID: 37400917
[TBL] [Abstract][Full Text] [Related]
11. Unmet needs in countries participating in the undiagnosed diseases network international: an international survey considering national health care and economic indicators.
Sciascia S; Roccatello D; Salvatore M; Carta C; Cellai LL; Ferrari G; Lumaka A; Groft S; Alanay Y; Azam M; Baynam G; Cederroth H; Cutiongco-de la Paz EM; Dissanayake VHW; Giugliani R; Gonzaga-Jauregui C; Hettiarachchi D; Kvlividze O; Landoure G; Makay P; Melegh B; Ozbek U; Puri RD; Romero VI; Scaria V; Jamuar SS; Shotelersuk V; Gahl WA; Wiafe SA; Bodamer O; Posada M; Taruscio D
Front Public Health; 2023; 11():1248260. PubMed ID: 37822540
[TBL] [Abstract][Full Text] [Related]
12. The Tuscany Regional Network for rare diseases: from European Reference Networks' experience to registry based organisation and management model for rare diseases.
Pieroni F; Marrucci S; Di Pietro L; Berni C; Scaletti C
Orphanet J Rare Dis; 2023 Oct; 18(1):324. PubMed ID: 37833795
[TBL] [Abstract][Full Text] [Related]
13. The EuRRECa Project as a Model for Data Access and Governance Policies for Rare Disease Registries That Collect Clinical Outcomes.
Ali SR; Bryce J; Tan LE; Hiort O; Pereira AM; van den Akker ELT; Appelman-Dijkstra NM; Bertherat J; Cools M; Dekkers OM; Kodra Y; Persani L; Smyth A; Smythe C; Taruscio D; Ahmed SF
Int J Environ Res Public Health; 2020 Nov; 17(23):. PubMed ID: 33255540
[TBL] [Abstract][Full Text] [Related]
14. RD-Connect, NeurOmics and EURenOmics: collaborative European initiative for rare diseases.
Lochmüller H; Badowska DM; Thompson R; Knoers NV; Aartsma-Rus A; Gut I; Wood L; Harmuth T; Durudas A; Graessner H; Schaefer F; Riess O; ; ;
Eur J Hum Genet; 2018 Jun; 26(6):778-785. PubMed ID: 29487416
[TBL] [Abstract][Full Text] [Related]
15. Delphi approach to select rare diseases for a European representative survey. The BURQOL-RD study.
Linertová R; Serrano-Aguilar P; Posada-de-la-Paz M; Hens-Pérez M; Kanavos P; Taruscio D; Schieppati A; Stefanov R; Péntek M; Delgado C; von der Schulenburg JM; Persson U; Chevreul K; Fattore G; Worbes-Cerezo M; Sefton M; López-Bastida J;
Health Policy; 2012 Nov; 108(1):19-26. PubMed ID: 22947412
[TBL] [Abstract][Full Text] [Related]
16. Phenotypic similarity-based approach for variant prioritization for unsolved rare disease: a preliminary methodological report.
Lagorce D; Lebreton E; Matalonga L; Hongnat O; Chahdil M; Piscia D; Paramonov I; Ellwanger K; Köhler S; Robinson P; Graessner H; Beltran S; Lucano C; Hanauer M; Rath A
Eur J Hum Genet; 2024 Feb; 32(2):182-189. PubMed ID: 37926714
[TBL] [Abstract][Full Text] [Related]
17. Rare diseases in the year 2019 - the Czech and international context.
Macek M
Cas Lek Cesk; 2019; 158(1):33-37. PubMed ID: 31046390
[TBL] [Abstract][Full Text] [Related]
18. [Healthcare networks for people with rare diseases: integrating data and expertise].
Graessner H; Storf H; Schaefer F
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz; 2022 Nov; 65(11):1164-1169. PubMed ID: 36167994
[TBL] [Abstract][Full Text] [Related]
19. How the EUCERD Joint Action supported initiatives on Rare Diseases.
Lynn S; Hedley V; Atalaia A; Evangelista T; Bushby K;
Eur J Med Genet; 2017 Mar; 60(3):185-189. PubMed ID: 28087401
[TBL] [Abstract][Full Text] [Related]
20. An innovative technological infrastructure for managing SARS-CoV-2 data across different cohorts in compliance with General Data Protection Regulation.
Dellacasa C; Ortali M; Rossi E; Abu Attieh H; Osmo T; Puskaric M; Rinaldi E; Prasser F; Stellmach C; Cataudella S; Agarwal B; Mata Naranjo J; Scipione G
Digit Health; 2024; 10():20552076241248922. PubMed ID: 38766364
[TBL] [Abstract][Full Text] [Related]
[Next] [New Search]
