281 related articles for article (PubMed ID: 29214593)
1. The Role of Solidarity(-ies) in Rare Diseases Research.
Mascalzoni D; Petrini C; Taruscio D; Gainotti S
Adv Exp Med Biol; 2017; 1031():589-604. PubMed ID: 29214593
[TBL] [Abstract][Full Text] [Related]
2. Patient Empowerment and Involvement in Research.
Perestelo-Pérez L; Rivero-Santana A; Abt-Sacks A; Toledo-Chavarri A; Brito N; Álvarez-Pérez Y; González-Hernández N; Serrano-Aguilar P
Adv Exp Med Biol; 2017; 1031():249-264. PubMed ID: 29214577
[TBL] [Abstract][Full Text] [Related]
3. Family solidarity and informal care: the case of care for people with dementia.
ter Meulen R; Wright K
Bioethics; 2012 Sep; 26(7):361-8. PubMed ID: 22827317
[TBL] [Abstract][Full Text] [Related]
4. 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]
5. Health-related quality of life among adults with diverse rare disorders.
Bogart KR; Irvin VL
Orphanet J Rare Dis; 2017 Dec; 12(1):177. PubMed ID: 29212508
[TBL] [Abstract][Full Text] [Related]
6. Meeting Patients' Right to the Correct Diagnosis: Ongoing International Initiatives on Undiagnosed Rare Diseases and Ethical and Social Issues.
Gainotti S; Mascalzoni D; Bros-Facer V; Petrini C; Floridia G; Roos M; Salvatore M; Taruscio D
Int J Environ Res Public Health; 2018 Sep; 15(10):. PubMed ID: 30248891
[TBL] [Abstract][Full Text] [Related]
7. Patient-Reported Outcome and Observer-Reported Outcome Assessment in Rare Disease Clinical Trials: An ISPOR COA Emerging Good Practices Task Force Report.
Benjamin K; Vernon MK; Patrick DL; Perfetto E; Nestler-Parr S; Burke L
Value Health; 2017; 20(7):838-855. PubMed ID: 28712612
[TBL] [Abstract][Full Text] [Related]
8. Family pediatrics: report of the Task Force on the Family.
Schor EL;
Pediatrics; 2003 Jun; 111(6 Pt 2):1541-71. PubMed ID: 12777595
[TBL] [Abstract][Full Text] [Related]
9. Health research participants are not receiving research results: a collaborative solution is needed.
Long CR; Stewart MK; McElfish PA
Trials; 2017 Oct; 18(1):449. PubMed ID: 28969665
[TBL] [Abstract][Full Text] [Related]
10. Rare Disease Biospecimens and Patient Registries: Interoperability for Research Promotion, a European Example: EuroBioBank and SpainRDR-BioNER.
Rubinstein YR; Posada de la Paz M; Mora M
Adv Exp Med Biol; 2017; 1031():141-147. PubMed ID: 29214569
[TBL] [Abstract][Full Text] [Related]
11. Challenges in Research and Health Technology Assessment of Rare Disease Technologies: Report of the ISPOR Rare Disease Special Interest Group.
Nestler-Parr S; Korchagina D; Toumi M; Pashos CL; Blanchette C; Molsen E; Morel T; Simoens S; Kaló Z; Gatermann R; Redekop W
Value Health; 2018 May; 21(5):493-500. PubMed ID: 29753344
[TBL] [Abstract][Full Text] [Related]
12. Stimulating solidarity to improve knowledge on medications used during pregnancy : A contribution from the ConcePTION project.
Hollestelle MJ; van der Graaf R; Sturkenboom MC; van Delden JJ
BMC Med Ethics; 2023 Jun; 24(1):44. PubMed ID: 37370079
[TBL] [Abstract][Full Text] [Related]
13. Promoting the participant-researcher partnership.
Zhao JQ; Haga SB
Genet Med; 2014 Mar; 16(3):228-30. PubMed ID: 24009003
[No Abstract] [Full Text] [Related]
14. 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]
15. [The analysis of physicians' work: announcing the end of attempts at in vitro fertilization].
Santiago-Delefosse M; Cahen F; Coeffin-Driol C
Encephale; 2003; 29(4 Pt 1):293-305. PubMed ID: 14615699
[TBL] [Abstract][Full Text] [Related]
16. Solidarity and the ethics of exposing others to risk in medical research.
Łuków P
Bioethics; 2022 Oct; 36(8):821-828. PubMed ID: 35575127
[TBL] [Abstract][Full Text] [Related]
17. Public health research on rare diseases.
Alonso V; Villaverde-Hueso A; Hens M; Morales-Piga A; Abaitua I; Posada de la Paz M
Georgian Med News; 2011 Apr; (193):11-6. PubMed ID: 21617266
[TBL] [Abstract][Full Text] [Related]
18. Biomedical Data Sharing and Reuse: Attitudes and Practices of Clinical and Scientific Research Staff.
Federer LM; Lu YL; Joubert DJ; Welsh J; Brandys B
PLoS One; 2015; 10(6):e0129506. PubMed ID: 26107811
[TBL] [Abstract][Full Text] [Related]
19. Improved Diagnosis and Care for Rare Diseases through Implementation of Precision Public Health Framework.
Baynam G; Bowman F; Lister K; Walker CE; Pachter N; Goldblatt J; Boycott KM; Gahl WA; Kosaki K; Adachi T; Ishii K; Mahede T; McKenzie F; Townshend S; Slee J; Kiraly-Borri C; Vasudevan A; Hawkins A; Broley S; Schofield L; Verhoef H; Groza T; Zankl A; Robinson PN; Haendel M; Brudno M; Mattick JS; Dinger ME; Roscioli T; Cowley MJ; Olry A; Hanauer M; Alkuraya FS; Taruscio D; Posada de la Paz M; Lochmüller H; Bushby K; Thompson R; Hedley V; Lasko P; Mina K; Beilby J; Tifft C; Davis M; Laing NG; Julkowska D; Le Cam Y; Terry SF; Kaufmann P; Eerola I; Norstedt I; Rath A; Suematsu M; Groft SC; Austin CP; Draghia-Akli R; Weeramanthri TS; Molster C; Dawkins HJS
Adv Exp Med Biol; 2017; 1031():55-94. PubMed ID: 29214566
[TBL] [Abstract][Full Text] [Related]
20.
; ; . PubMed ID:
[No Abstract] [Full Text] [Related]
[Next] [New Search]