Educational Research and Reviews

  • Abbreviation: Educ. Res. Rev.
  • Language: English
  • ISSN: 1990-3839
  • DOI: 10.5897/ERR
  • Start Year: 2006
  • Published Articles: 2009

Full Length Research Paper

A systematic review of research into rare diseases in the educational sphere

Leire Darretxe*
  • Leire Darretxe*
  • Department of Didactic and School Organization, University College of Teacher Training, University of the Basque Country, Spain.
  • Google Scholar
Zurine Gaintza
  • Zurine Gaintza
  • Department of Didactic and School Organization, University College of Teacher Training, University of the Basque, Spain.
  • Google Scholar
Javier Monzon-Gonzalez
  • Javier Monzon-Gonzalez
  • Department of Didactic and School Organization, Faculty of Education, Philosophy and Anthropology, University of the Basque, Spain.
  • Google Scholar


  •  Received: 23 February 2017
  •  Accepted: 11 May 2017
  •  Published: 23 May 2017

References

Alkhateeb JM, Hadidi MS, Alkhateeb AJ (2016). Inclusion of children with developmental disabilities in Arab countries: A review of the research literature from 1990 to 2014. Res Dev Disabil, 49-50:60-75.
Crossref

 

Andersen T, Le Cam Y, Weinman A (2014). European reference networks for rare diseases: The vision of patients. Blood Transfus, 12:S626-S627.

 

Ayme S, Rodwell C (2014). The European union committee of experts on rare diseases: Three productive years at the service of the rare disease community. Orphanet J. Rare Dis. 9:30.
Crossref

 

Ayme S, Bellet B, Rath A (2015). Rare diseases in ICD11: Making rare diseases visible in health information systems through appropriate coding. Orphanet J. Rare Dis. 10:35.
Crossref

 

Barrio JA, Castro A (2008). Infrastructure and resources of social, educational and health support in rare diseases. An Sist Sanit Navar, 31:153-163.

 

Begeny JC, Martens BK (2007). Inclusionary education in italy - A literature review and call for more empirical research. Rem. Spec. Educ. 28(2):80-94.
Crossref

 

Brouard-Lapointe A, Moutel G, Gimenes P (2015). Rare diseases and patient organization collaboration in the medical research: Analysis of the issues with all the protagonists. Mol. Genet. Metab. 114(2):S25-S25.
Crossref

 

Bryant DP, Smith DD, Bryant BR (2008). Teaching Students with Special Needs in Inclusive Classrooms. Boston, MA: Pearson Education, Inc.

 

Budych K, Helms TM, Schultz C (2012). How do patients with rare diseases experience the medical encounter? exploring role behavior and its impact on patient-physician interaction. Health Policy 105(2):154-164.
Crossref

 

Chisolm S, Salkeld E, Houk A, Huber J (2014). Partnering in medical education: Rare disease organizations bring experts and a patient voice to the conversation. Expert Opin. Orphan D. 2(11):1171-1174.
Crossref

 

Cismondi I, Kohan R, Adams H, Bond M, Brown R, Cooper JD, Noher de Halac I (2015). Guidelines for incorporating scientific knowledge and practice on rare diseases into higher education: Neuronal ceroid lipofuscinoses as a model disorder. Bba-Mol. Basis Dis. 1852(10):2316-2323.
Crossref

 

Clarke JTR, Coyle D, Evans G, Martin J, Winquist E (2014). Toward a functional definition of a "rare disease" for regulatory authorities and funding agencies. Value Health, 17(8):757-761.
Crossref

 

Cui Y, Han J (2015). A proposed definition of rare diseases for china: From the perspective of return on investment in new orphan drugs. Orphanet. J. Rare Dis. 10:28.
Crossref

 

Demetriou Y, Sudeck G, Thiel A, Hoener O (2015). The effects of school-based physical activity interventions on students' health-related fitness knowledge: A systematic review. Educ. Res. Rev-Neth. 16:19-40.
Crossref

 

Dragusin R, Petcu P, Lioma C, Larsen B, Jorgensen HL, Cox IJ, Winther O (2013). FindZebra: A search engine for rare diseases. Int. J. Med. Inform. 82(6):528-538.
Crossref

 

Facey K, Hansen HP (2015). The imperative for patient-centred research to develop better quality services in rare diseases. Patient, 8(1):1-3.
Crossref

 

Facey K, Granados A, Guyatt G, Kent A, Shah N, van der Wilt GJ, Wong-Rieger D (2014). Generating health technology assessment evidence for rare diseases. Int. J. Technol. Assess 30(4):416-422.
Crossref

 

Fagnan DE, Yang NN, McKew JC, Lo AW (2015). Financing translation: Analysis of the NCATS rare-diseases portfolio. Sci. Transl. Med. 7(276):276ps3.
Crossref

 

Fedyaeva VK, Omelyanovsky VV, Rebrova O, Khan N, Petrovskaya EV (2014). Mcda approach to ranking rare diseases in russia: Preliminary results. Value Health 17(7):A539-A539.
Crossref

 

Fioravanti C (2014). Rare diseases receive more attention in Brazil. Lancet 384(9945):736-736.
Crossref

 

García M (2013). The diagnosis of rare diseases in the primary care clinic: Dismantling the myth. Aten Prim, 45(7):338-340.

 

Groft SC (2013). Rare diseases research expanding collaborative translational research opportunities. Chest 144(1):16-23.
Crossref

 

Groft SC, Rubinstein YR (2013). New and evolving rare diseases research programs at the national institutes of health. Public Health Genom. 16(6):259-267.
Crossref

 

Han KG (2008). A study on the characteristics and educational support for children with rare diseases. Korean J. Phys. Multiple Health Disabil. 51(3):1-18.
Crossref

 

Jinnah HA (2011). Needles in haystacks: The challenges of rare diseases. Dev. Med. Child Neurol. 53(1):6-7.
Crossref

 

Kesselheim AS, McGraw S, Thompson L, O'Keefe K, Gagne JJ (2015). Development and use of new therapeutics for rare diseases: Views from patients, caregivers, and advocates. Patient 8(1):75-84.
Crossref

 

Kirby T (2012). Australia makes up for lost time on rare diseases. Lancet 379(9827):1689-1690.
Crossref

 

Kovács L, Hegyi E, Nagyová G (2013). Orphanet - information, education and expert centres for rare diseases. Acta Facultatis Pharmaceuticae Universitatis Comenianae, 60(SUPPL. 8):10-15.
Crossref

 

Lee HH, Lee KM (2014). Students diagnosed with congenital vascular malformation as a form of rare diseases and their parents' experiences and needs. J. Spec. Educ. 21(2):26

 

Lin J, Lin L, Hung W (2013). Reported numbers of patients with rare diseases based on ten-year longitudinal national disability registries in Taiwan. Res. Dev. Disabil. 34(1):133-138.
Crossref

 

Luzzatto L, Hollak CEM, Cox TM, Schieppati A, Licht C, Kaariainen H, Remuzzi, G (2015). Rare diseases and effective treatments: Are we delivering? Lancet 385(9970):750-752.
Crossref

 

Mavris M, Dunkle M (2014). Working collaboratively and internationally to improve the lives of people affected by rare disease. Expert Opin. Orphan. D. 2(11):1117-1121.
Crossref

 

McLeskey JY, Waldron NL (2002). School change and inclusive schools: Lessons learned from practice. Phi Delta Kappan, 84(1):65.
Crossref

 

Moliner AM, Waligora J (2013). The European union policy in the field of rare diseases. Public Health Genom. 16(6):268-277.
Crossref

 

Rabeharisoa V, Callon M, Filipe AM, Nunes JA, Paterson F, Vergnaud F (2014). From 'politics of numbers' to 'politics of singularisation': Patients' activism and engagement in research on rare diseases in france and portugal. Biosocieties 9(2):194-217.
Crossref

 

Ramalle E, Ruiz E, Quinones C, Andres S, Iruzubieta J, Gil J (2015). General knowledge and opinion of future health care and non-health care professionals on rare diseases. J. Eval. Clin. Pract. 21(2):198-201.
Crossref

 

Rose R (2002). The curriculum: A vehicle for inclusion or a lever for exclusion?. In C. Tilstone, Florian L, Rose R (Eds.), Promoting inclusive practice (pp. 27-38). London, UK/ New York, NY: Routledge Falmer.

 

Schieppati A, Henter J, Daina E, Aperia A (2008). Why rare diseases are an important medical and social issue. Lancet 371(9629):2039-2041.
Crossref

 

Schultz C, Schreyoegg J, Stargardt T (2012). Focus on designing health care structures and services for rare diseases. Health Policy 105(2-3):107-109.
Crossref

 

Schumacher KR, Stringer KA, Donohue JE, Yu S, Shaver A, Caruthers RL, Russell MW (2014). Social media methods for studying rare diseases. Pediatrics 133(5):E1345-E1353.
Crossref

 

Scott BJ, Vitale MR, Masten WG (1998). Implementing instructional adaptations for students with disabilities in inclusive classrooms. A literature review. Rem. Spec. Educ. 19(2):106-119.
Crossref

 

Silibello G, Vizziello P, Gallucci M, Selicorni A, Milani D, Ajmone PF, Lalatta F (2016). Daily life changes and adaptations investigated in 154 families with a child suffering from a rare disability at a public centre for rare diseases in northern Italy. Ital. J. Pediatr. 42:76.
Crossref

 

Smith CT, Williamson PR, Beresford MW (2014). Methodology of clinical trials for rare diseases. Best Pract. Res. Cl. Rh. 28(2):247-262.
Crossref

 

Tambuyzer E (2010). Rare diseases, orphan drugs and their regulation: questions and misconceptions. Nature Review, Drug discov. 9:921-929.
Crossref

 

Taruscio D, Capozzoli F, Frank C (2011). Rare diseases and orphan drugs. Ann Super Sanita 47(1):83-93.

 

Taruscio D, Agresta L, Amato A, Bernardo G, Bernardo L, Braguti F, Vittozzi L (2014a). The Italian national centre for rare diseases: Where research and public health translate into action. Blood Transfus, 12:S591-S605.

 

Taruscio D, Gentile AE, Evangelista T, Frazzica RG, Bushby K, Montserrat AM (2014b). Centres of expertise and European reference networks: Key issues in the field of rare diseases. the EUCERD recommendations. Blood Transfus. 12:S621-S625.

 

Torrente E, Martí T, Escarrabill J (2010). Impacto de las redes sociales de pacientes en la práctica asistencial. Revista de Innovación Sanitaria y Atención Integrada 2(1):1- 8.

 

Van Karnebeek CDM, Houben RFA, Lafek M, Giannasi W, Stockler S (2012). The treatable intellectual disability APP www.treatable-id.org: A digital tool to enhance diagnosis & care for rare diseases. Orphanet J. Rare Dis. 7:47.

 

Von der Schulenburg JG, Frank M (2015). Rare is frequent and frequent is costly: Rare diseases as a challenge for health care systems. Eur. J. Health Econ. 16(2):113-118.
Crossref

 

Waldman HB, Perlman SP, Munter BL, Chaudhry RA (2008). Not so rare, rare diseases. The Except. Parent 38:46-47.