National regulation defines along EU regulation principles what tests for what kind of purposes should be available and if it is not available in the country where can the patients go for the necessary examinations. The patients must be informed by health care professionals about their further possibilities. This process should be based on a EU database. The patient has the right to decide when and what kind of tests will be done.
Hungary, 14/04/2010

European regulation defines what kind of tests may be performed and for which diagnosis. Patients should receive the results of the tests from a skilled health care professional.
Hungary, 02/07/2010

European regulation defines what kind of tests may be performed and for which diagnosis. Patients should receive the results of the tests from a skilled health care professional.
Hungary, 02/07/2010

National regulation and the patient's decission defines what kind of tests may be performed and for which diagnosis. Patients should receive the results of the tests from a genetic counselling professional.
Hungary, 15/10/2010

"Chronic sick model". All care covered, care standards, prevention, diagnosis, treatment + psycho-social.
Netherlands, 12/05/2011

Patients should be able to send samples to any recognised laboratory test from a suitably qualified person, eg. GP, consultant (this would ensure regulation).
Netherlands, 12/05/2011

i test devono essere definiti a livello europeo e disponibili per tutti ma la comunicazione deve essere affidata a chi prenderà in carico il paziente (Genetic tests must be defined at European level and available for all but the diagnosis release should be entrusted to those who will take care of the patient.)
Italy, 27/05/2011

POLKA- I tipi di test disponibili e le patologie da ricercare devono essere definiti da leggi europee per evitare le conseguenti migrazioni.I test biochimici e molecolari per la diagnosi di MR devono essere effettuati in laboratori specializzati e certificati in base ai criteri europei. Si potrà così evitare il business di offerta test da parte di laboratori autonomi. Gli esiti del test diagnostico vanno consegnati al paziente solo da un medico esperto,capace di considerare e comunicare l'alterazione genetica in un contesto più ampio.Le informazioni genetiche devono essere modulate in un contesto globale clinico -funzionale. E' necessario creare un percorso formativo del medico per il perfezionamento della comunicazione (The types of tests available and the diseases to be researched must be defined by European laws to prevent the subsequent migration of patients. Biochemical and molecular tests for the diagnosis of RD should be performed in specialized and certified laboratories according to European criteria. It can thus avoid the business of test offering by independent laboratories. The results of the diagnostic test must be delivered to the patient only by an experienced physician , able to consider and communicate the genetic alteration in a broader context. Genetic information must be modulated in a global clinical and functional context. It is necessary to create a training program for the improvement of doctors' communication skill)
Italy, 27/05/2011

Commonly used legislation in Greece and in Europe concerning cross border handling of blood samples/certain medical examinations.
Greece, 18/07/2011

European policy establishes what types of tests are done and for what diagnostic areas. Europe-approved genetic counselors, accompanied by a psychologist, will give the results directly to the patient.
Spain, 24/11/2010

Europe decides what types of tests to do. Patients should receive results from a health professional (geneticist, doctor and psychologist).
Spain, 21/05/2010

A combination of position 3 and 4: Regulation/guidelines (National or European) should define what kind of tests may be performed and under which circumstances. Patients should receive the results of the tests from a skilled healthcare professional, who is preferably certified.
Netherlands, 19/08/2011

Os regulamentos europeus definem o tipo de exames que podem ser realizados e para que diagnóstico de forma a conseguir a unificação entre todos os estados membros. Os consultores genéticos, certificados de acordo com directrizes europeias uniforme, são os que devem dar os resultados ao doente.Como opção alternativa pode haver um especialista intermediário que conheça o doente em questão e que seja o mais adequado para dar o resultado, já que o doente sentir-se-à mais reconfortante. Por último, a União europeia deve marcar as directrizes no âmbito do investimento para a investigação nas doenças raras, promovendo o desenvolvimento de programas de prevenção. Finalmente, a UE deve marcar os deveres que devem impostos às seguradoras, na fase pós-aconselhamento genético. European regulations should define the type of tests that may be performed and for which diagnosis so that there is agreement between all member states. The genetic counselors, certified according to uniform European guidelines, are the ones to give the results to. An alternative option may be an expert intermediary who knows the patient in question and that is best suited to give the result, since the ill-feeling to the more comforting. Finally, the European Union should check the guidelines for investment for research on rare diseases, promoting the development of prevention programs. Finally, the EU should mark the duties that are imposed on insurers in post-genetic counseling. European regulations should define the type of tests that may be performed and for which diagnosis so that there is agreement between all member states. The genetic counselors, certified according to uniform European guidelines, should collect the results. An alternative option may be an expert intermediary who knows the patient in question and that is best suited to give the result, since it would be more comforting for the patient. Finally, the European Union should check the guidelines for investment for research on rare diseases, promoting the development of prevention programs. Finally, the EU should mark the duties that are imposed on insurers in post-genetic counseling.
Portugal, 06/07/2011

Quality Check: Ensure only evidence based treatments are sanctioned. Independent body to check treatments. Backed by the WHO (chronic care model).
Netherlands, 12/05/2011

Guidance from expertise personnel only, that has attempted special education, national certification or medical specialty
Greece, 18/07/2011

Costs are covered: Heelprick - genetic counselling. Fall under the care standard + efficient + transparent.
Netherlands, 12/05/2011

Genetic counseling politics, i.e. algorithms for personalized patient guidance
Greece, 18/07/2011