PatientView | 来自患者组织的德国洞察：定价谈判桌上的一席之地

患者群体目标

以下百分比突出显示了37个患者群体如何与监管机构互动并倡导患者利益。由于受访者可能在多个领域有所代表，百分比总和可能不等于100%。

互动

患者群体如何与药品监管机构互动

了解目标的含义

28 提及

10 提及

2 提及

行动与倡导

患者群体如何获得药物

了解目标的含义

3 提及

2 提及

1 提及

英文文本	治疗领域	类别	已触达患者	地理覆盖范围	监管参与	受访者
Involvement with the German Federal Health Office (Bundesgesundheitsamt, BGA).	癌症 > 癌症：血液	监管合作伙伴关系 > 与监管机构合作	5,000	National	Regularly	119036570540
A overarching role within the German statutory self-governing bodies.	稀有 > 罕见病：遗传性	监管合作伙伴关系 > 与监管机构合作	5,000	National	Regularly	119037461600
Member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee] and the S3 guideline committee.	癌症 > 癌症：前列腺	监管合作伙伴关系 > 与监管机构合作	5,000	National	Regularly	119066077609
The G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee] has invited us to nominate a disease-specific patient representative for the early benefit assessment of a new medicinal product for PKU [Phenylketonuria].	稀有 > 苯丙酮尿症（PKU）	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	5,000	National	Rarely	119012111929
Member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	神经退行性 > 亨廷顿病	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	5,000	National	Regularly	119012382661
Patient representation on the G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee] Pharmaceuticals Sub-Committee in Germany.	癌症 > 癌症：卵巢癌	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	1,000	Regional	Regularly	119016020868
Participation in the G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee], RKI [Robert Koch-Institut – Robert Koch Institute], and Arbeitskreis Blut [Advisory Committee on Blood].	出血 > 出血性疾病：大多数类型	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	5,000	National	Regularly	119021710214
We have two members involved in the areas of AMNOG [Arzneimittelmarktneuordnungsgesetz – Act on the Reform of the Market for Medicinal Products] and the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	癌症 > 癌症：前列腺	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	10,000	National	Regularly	119021721162
GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	神经退行性 > 共济失调	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	1,000	National	Regularly	119023209361
G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	出血 > 出血性疾病：大多数类型	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	5,000	National	Regularly	119031254796
Gemeinsamer Bundesausschuss [Federal Joint Committee] – HTA [Health Technology Assessment].	未指定 > 未指定	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	10,000	National	Sometimes	119035820516
G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	总体健康 > 肥胖症	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	5,000	National	Sometimes	119035837988
Patient representation on the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	未指定 > 未指定	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	10,000	National	Sometimes	119036152561
Representation on the G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee], with advisory rights — though not voting rights — in proceedings relating to the additional benefit assessment of medicinal products and, where applicable, the consequent determination of pricing.	癌症 > 癌症：血液	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	1,000	National	Sometimes	119040765109
G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee] decision on gene expression tests.	癌症 > 癌症：乳腺癌	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	100	National	Sometimes	119044135956
G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee], IQWiG [Institut für Qualität und Wirtschaftlichkeit im Gesundheitswesen – Institute for Quality and Efficiency in Health Care], EMA [European Medicines Agency].	神经肌肉 > 重症肌无力	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	5,000	National	Regularly	119055419948
G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee] assessment procedure forPegunigalsidase alfa.	稀有 > 法布里病	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	1,000	National	Rarely	119060598327
Member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee] and the S3 guideline committee.	癌症 > 癌症：前列腺	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	5,000	National	Regularly	119066077609
We have patient representatives in the Joint Committee for AMNOG [Arzneimittelmarktneuordnungsgesetz – Act on the Reform of the Market for Medicinal Products].	癌症 > 癌症：前列腺	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	10,000	National	Regularly	119069535789
GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	移植 > 移植：最多	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	1,000	National	Sometimes	119072853667
GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	神经系统 > 偏头痛/其他头痛疾病	监管合作伙伴关系 > 参与卫生技术评估（HTA）和报销审查	1,000	Regional	Regularly	119078080419
We submitted a statement in connection with a potential regulatory approval decision concerning a medicinal product, specifically addressing the proposed authorisation of a transition from a 14-day infusion regimen to a 4-weekly infusion schedule.	稀有 > 法布里病	监管合作伙伴关系 > 为营销授权申报做出贡献	100	National	Rarely	119015180995
For example, in the development of clinical guidelines.	总体健康 > 性健康：其他	监管合作伙伴关系 > 参与临床指南制定机构	1,000	National	Sometimes	119060973871
Member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee] and the S3 guideline committee.	癌症 > 癌症：前列腺	监管合作伙伴关系 > 参与临床指南制定机构	5,000	National	Regularly	119066077609
The G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee] has invited us to nominate a disease-specific patient representative for the early benefit assessment of a new medicinal product for PKU [Phenylketonuria].	稀有 > 苯丙酮尿症（PKU）	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	5,000	National	Rarely	119012111929
Participation in the G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee], RKI [Robert Koch-Institut – Robert Koch Institute], and Arbeitskreis Blut [Advisory Committee on Blood].	出血 > 出血性疾病：大多数类型	监管合作伙伴关系 > 参加/主持与政策制定者/监管机构的会议	5,000	National	Regularly	119021710214
Representation is usually in the hands of local sarcoma groups. We support them as required.	癌症 > 癌症：肉瘤	监管合作伙伴关系 > 与其他医疗保健倡导者	We do not communicate with patients directly	International	Sometimes	119011263055
Our lay patient advocacy organisation is expressly prohibited from participating in, or contributing to, decisions on drug pricing. We operate under the House of Cancer Self-Help (Haus der Krebsselbsthilfe), under the umbrella of the Deutsche Krebshilfe Foundation, based in Bonn.	癌症 > 癌症：膀胱癌	监管合作伙伴关系 > 与其他医疗保健倡导者	1,000	National	Regularly	119061069101
Representation on the G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee], with advisory rights — though not voting rights — in proceedings relating to the additional benefit assessment of medicinal products and, where applicable, the consequent determination of pricing.	癌症 > 癌症：血液	定价与可负担性倡导 > 参与价格审查委员会谈判	1,000	National	Sometimes	119040765109
A dedicated round table on the AMNOG [Arzneimittelmarktneuordnungsgesetz – Act on the Reform of the Market for Medicinal Products] is planned, prompted by the absence of market launches following positive approval studies for innovative medicines.	HIV > HIV	定价与可负担性倡导 > 参与价格审查委员会谈判	100	National	Sometimes	119067399626
For example, advocating for cost coverage of STI [Sexually Transmitted Infection] diagnostics following sexual violence.	总体健康 > 性健康：其他	定价与可负担性倡导 > 解决低收入和弱势群体面临的费用障碍	Do not know	National	Rarely	119079711468
A dedicated round table on the AMNOG [Arzneimittelmarktneuordnungsgesetz – Act on the Reform of the Market for Medicinal Products] is planned, prompted by the absence of market launches following positive approval studies for innovative medicines.	HIV > HIV	定价与可负担性倡导 > 倡导将产品纳入报销目录/国家处方集	100	National	Sometimes	119067399626
Adverse events and medication availability.	出血 > 出血性疾病：大多数类型	改善访问路径 > 促进公平获取药品/医疗保健	5,000	National	Regularly	119062915143
Patients with PPS [Post-Polio Syndrome] are unable to take medications that place strain on respiratory function, musculature, or metabolism.	传染性 > 传染病：其他	诊断与药品配送 > 确保安全有效地使用药物	1,000	National	Regularly	119044103374
Adverse events and medication availability.	出血 > 出血性疾病：大多数类型	诊断与药品配送 > 确保安全有效地使用药物	5,000	National	Regularly	119062915143
Participation in the G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee], RKI [Robert Koch-Institut – Robert Koch Institute], and Arbeitskreis Blut [Advisory Committee on Blood].	出血 > 出血性疾病：大多数类型	诊断与药品配送 > 参与制定临床指南	5,000	National	Regularly	119021710214
For example, in the development of clinical guidelines.	总体健康 > 性健康：其他	诊断与药品配送 > 参与制定临床指南	1,000	National	Sometimes	119060973871
Introduction of newborn screening.	免疫 > 原发性免疫缺陷病	诊断与药品配送 > 支持筛查和早期检测	1,000	National	Regularly	119078084362
Member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	神经退行性 > 亨廷顿病	机构治理 > 确保在政府咨询机构中的代表性	5,000	National	Regularly	119012382661
Patient representation on the G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee] Pharmaceuticals Sub-Committee in Germany.	癌症 > 癌症：卵巢癌	机构治理 > 确保在政府咨询机构中的代表性	1,000	Regional	Regularly	119016020868
We have two members involved in the areas of AMNOG [Arzneimittelmarktneuordnungsgesetz – Act on the Reform of the Market for Medicinal Products] and the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	癌症 > 癌症：前列腺	机构治理 > 确保在政府咨询机构中的代表性	10,000	National	Regularly	119021721162
Representative on the Federal Joint Committee [Gemeinsamer Bundesausschuss] for physicians and statutory health insurers.	移植 > 移植：肝脏	机构治理 > 确保在政府咨询机构中的代表性	5,000	National	Regularly	119035838851
Representative on the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	视觉障碍 > 视网膜疾病	机构治理 > 确保在政府咨询机构中的代表性	10,000	National	Sometimes	119035839364
Patient representation on the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	未指定 > 未指定	机构治理 > 确保在政府咨询机构中的代表性	10,000	National	Sometimes	119036152561
We are a member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	神经退行性 > 亨廷顿病	机构治理 > 确保在政府咨询机构中的代表性	1,000	National	Regularly	119036314886
A overarching role within the German statutory self-governing bodies.	稀有 > 罕见病：遗传性	机构治理 > 确保在政府咨询机构中的代表性	5,000	National	Regularly	119037461600
We have patient representatives in the Joint Committee for AMNOG [Arzneimittelmarktneuordnungsgesetz – Act on the Reform of the Market for Medicinal Products].	癌症 > 癌症：前列腺	机构治理 > 确保在政府咨询机构中的代表性	10,000	National	Regularly	119069535789
Involvement in the EHA [European Hematology Association].	癌症 > 癌症：血液	机构治理 > 在多利益相关方网络中高效协作	5,000	National	Regularly	119036570540

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患者群体声音

患者群体目标

患者群体如何与药品监管机构互动

患者群体如何获得药物

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