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Welcome to Burqol RD Intranet. Powered by: Proyectran.com.
BURQOL RD
http://www.burqol-rd.eu/se.html
Vill du delta i en enkätundersökning om kostnader och livskvalitet bland personer med ovanliga diagnoser? Studien kallas BURQOL-RD och genomförs parallellt i 8 Europeiska länder och omfattar 10 ovanliga diagnoser. Studien finansieras av EU (BURQOL-RD 20091204) och samordnas av the Canary Foundation of Investigation and Health i samarbete med och Institutet för hälso- och sjukvårdsekonomi (IHE) i Lund. Hur går studien till? Kortfattat önskar vi få information om Din och Din omsorgsgivares (anhörig eller v...
BURQOL RD
http://www.burqol-rd.com/de.html
Herzlich Willkommen bei der Online-Befragung des Forschungsprojektes BURQOL-RD. Ziel dieser europäischen Studie ist es, die gesundheitsbezogene Lebensqualität und die sozioökonomischen Kosten von Patienten mit Seltenen Erkrankungen und ihren Pflegepersonen (in der Regel pflegende Angehörige) zu ermitteln. Informationen zum "BURQOL RD" Projekt. Bitte wählen Sie den Link mit Ihrer Erkrankung bzw. der Erkrankung des Patienten/der Patientin. LIST OF ACKNOWLEDGEMENT FOR OUR ESTEEMED PATIENTS IN GERMANY.
BURQOL RD
http://www.burqol-rd.eu/pag/objectivies.html
To generate a methodological framework to measure the socio-economic burden of RD. To define a methodological framework to measure the HRQOL of RD. To develop unified instruments to gather information on the socio-economic burden and HRQOL of RD throughout Europe. To perform a pilot study measuring the socio-economic burden and HRQOL for selected RD. To refine and package the tools developed for continued and more extensive costs and HRQOL studies of RD.
BURQOL RD
http://www.burqol-rd.com/bg.html
Добре дошли в анкетното проучване на проект BURQOL-RD, насочено към събиране на данни за социално-икономическите разходи и свързаното със здравето качество на живот на пациентите с редки болести и хората, които се грижат за тях. Тези данни ще бъдат използвани за подобряване на положението на засегнатите от редки болести чрез по-добро разбиране на техните нужди, тревоги и качество на живот. Първата част на въпросника се отнася за пациента и трябва да бъде попълнена от самия него или с помощта на друго лице.
BURQOL RD
http://www.burqol-rd.eu/index.html
BURQOL-RD was funded by the European Union in the framework of the Health Programme and it was coordinated by the Fundación Canaria de Investigación y Salud (FUNCIS) in 2010-2013. Besides, this instrument could be used to recognise, improve and update our knowledge of the socioeconomic impact of RDs in the European Union (both the direct and indirect costs), and their self-perceived health outcomes. The aim of the recruitment process was to identify and include as many patients as possible affected by on...
BURQOL RD
http://www.burqol-rd.com/pag/outcomes.html
An integrated and harmonized set of instruments to assess and monitor socio-economic burden and HRQOL of patients affected by RD and their caregivers. A detailed analysis of the services (health and social care) received by people with specific RD in different EU countries, including the identification of formal and informal care. A report on the current socioeconomic and HRQOL status of RD patients and caregivers for the selected RD and EU countries.
BURQOL RD
http://www.burqol-rd.eu/fr.html
Bienvenue dans l'enquête du projet BURQOL-RD qui a pour objectif de recueillir des données sur les coûts et la qualité de vie en rapport avec la santé de patients atteints de maladies rares et de leurs aidants. Les données recueillies feront l’objet d’un traitement informatique et seront utilisées pour une meilleure compréhension de leurs besoins, de leurs préoccupations et de leur qualité de vie. Vous pouvez trouver plus d'informations et les premiers résultats espagnol ici. Le sondage a terminé. Marion...
BURQOL RD
http://www.burqol-rd.com/fr.html
Bienvenue dans l'enquête du projet BURQOL-RD qui a pour objectif de recueillir des données sur les coûts et la qualité de vie en rapport avec la santé de patients atteints de maladies rares et de leurs aidants. Les données recueillies feront l’objet d’un traitement informatique et seront utilisées pour une meilleure compréhension de leurs besoins, de leurs préoccupations et de leur qualité de vie. Vous pouvez trouver plus d'informations et les premiers résultats espagnol ici. Le sondage a terminé. Marion...
BURQOL RD
http://www.burqol-rd.com/es.html
Nos gustaría presentarle e invitarle a participar en el proyecto BURQOL-RD. Este es un proyecto europeo coordinado por la Fundación Canaria de Investigación y Salud con la colaboración de FEDER. Su objetivo es medir la calidad de vida de las personas con fibrosis quística y de sus cuidadores, y cuantificar la carga. Que supone la enfermedad para la familia y la sociedad en España. Para participar en el proyecto sólo hay que rellenar una encuesta. Debería ser respondida por el paciente.
BURQOL RD
http://www.burqol-rd.com/pag/publications.html
Social/Economic Costs and Health-Related Quality of Life in Patients with Rare Diseases in Europe - Supplement in European Journal of Health Economics, Volume 17, Issue 1 Supplement, April 2016. López-Bastida J, Oliva-Moreno J, Linertová R, Serrano-Aguilar P. Social/Economic Costs and Health-Related Quality of Life in Patients with Rare Diseases in Europe. Eur J Health Econ. 2016 Apr;17 Suppl 1:1-5. Julio López-Bastida, Renata Linertová, Juan Oliva-Moreno, Pedro Serrano-Aguilar, Manuel Posada-de-la-Paz, ...
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