PatientView | 來自患者團體的德國洞察：在定價桌上佔有一席之地

病患群組目標

以下百分比顯示了 37 個患者群體如何與監管機構互動並倡導患者利益。由於受訪者可能在多個領域中被代表，百分比總和可能不等於 100%。

互動

病患團體如何與藥品監管機構互動

了解目標的含義

28 提及

10 提及

2 提及

行動與倡議

病患團體如何取得藥物

了解目標的含義

3 提及

2 提及

1 提及

英文文字	治療領域	類別	已觸及患者	地理覆蓋範圍	監管機構溝通	受訪者
Involvement with the German Federal Health Office (Bundesgesundheitsamt, BGA).	巨蟹座 > 癌症：血液	監管合作關係 > 與監管機構合作	5,000	National	Regularly	119036570540
A overarching role within the German statutory self-governing bodies.	稀有 > 罕見疾病：遺傳性	監管合作關係 > 與監管機構合作	5,000	National	Regularly	119037461600
Member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee] and the S3 guideline committee.	巨蟹座 > 癌症：攝護腺	監管合作關係 > 與監管機構合作	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）	監管合作關係 > 參與健康技術評估（HTA）及給付審查	5,000	National	Rarely	119012111929
Member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	神經退化性 > 亨丁頓舞蹈症	監管合作關係 > 參與健康技術評估（HTA）及給付審查	5,000	National	Regularly	119012382661
Patient representation on the G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee] Pharmaceuticals Sub-Committee in Germany.	巨蟹座 > 癌症：卵巢癌	監管合作關係 > 參與健康技術評估（HTA）及給付審查	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：大多數類型	監管合作關係 > 參與健康技術評估（HTA）及給付審查	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].	巨蟹座 > 癌症：攝護腺	監管合作關係 > 參與健康技術評估（HTA）及給付審查	10,000	National	Regularly	119021721162
GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	神經退化性 > 共濟失調	監管合作關係 > 參與健康技術評估（HTA）及給付審查	1,000	National	Regularly	119023209361
G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	出血 > 出血性疾病：大多數類型	監管合作關係 > 參與健康技術評估（HTA）及給付審查	5,000	National	Regularly	119031254796
Gemeinsamer Bundesausschuss [Federal Joint Committee] – HTA [Health Technology Assessment].	未指定 > 未指定	監管合作關係 > 參與健康技術評估（HTA）及給付審查	10,000	National	Sometimes	119035820516
G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	一般健康 > 肥胖症	監管合作關係 > 參與健康技術評估（HTA）及給付審查	5,000	National	Sometimes	119035837988
Patient representation on the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	未指定 > 未指定	監管合作關係 > 參與健康技術評估（HTA）及給付審查	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.	巨蟹座 > 癌症：血液	監管合作關係 > 參與健康技術評估（HTA）及給付審查	1,000	National	Sometimes	119040765109
G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee] decision on gene expression tests.	巨蟹座 > 癌症：乳癌	監管合作關係 > 參與健康技術評估（HTA）及給付審查	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].	神經肌肉 > 重症肌無力	監管合作關係 > 參與健康技術評估（HTA）及給付審查	5,000	National	Regularly	119055419948
G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee] assessment procedure forPegunigalsidase alfa.	稀有 > 法布瑞氏症	監管合作關係 > 參與健康技術評估（HTA）及給付審查	1,000	National	Rarely	119060598327
Member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee] and the S3 guideline committee.	巨蟹座 > 癌症：攝護腺	監管合作關係 > 參與健康技術評估（HTA）及給付審查	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].	巨蟹座 > 癌症：攝護腺	監管合作關係 > 參與健康技術評估（HTA）及給付審查	10,000	National	Regularly	119069535789
GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	移植 > 移植：最多	監管合作關係 > 參與健康技術評估（HTA）及給付審查	1,000	National	Sometimes	119072853667
GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	神經系統 > 偏頭痛/其他頭痛疾患	監管合作關係 > 參與健康技術評估（HTA）及給付審查	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 > 法布瑞氏症	監管合作關係 > 貢獻至行銷授權申請	100	National	Rarely	119015180995
For example, in the development of clinical guidelines.	一般健康 > 性健康：其他	監管合作關係 > 參與臨床指引制定機構	1,000	National	Sometimes	119060973871
Member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee] and the S3 guideline committee.	巨蟹座 > 癌症：攝護腺	監管合作關係 > 參與臨床指引制定機構	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）	監管合作關係 > 出席/主持與政策制定者/監管機構的會議	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：大多數類型	監管合作關係 > 出席/主持與政策制定者/監管機構的會議	5,000	National	Regularly	119021710214
Representation is usually in the hands of local sarcoma groups. We support them as required.	巨蟹座 > 癌症：肉瘤	監管合作關係 > 與其他醫療倡導者	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.	巨蟹座 > 癌症：膀胱癌	監管合作關係 > 與其他醫療倡導者	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.	巨蟹座 > 癌症：血液	定價與可負擔性倡議 > 參與價格審查委員會談判	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	定價與可負擔性倡議 > 參與價格審查委員會談判	100	National	Sometimes	119067399626
For example, advocating for cost coverage of STI [Sexually Transmitted Infection] diagnostics following sexual violence.	一般健康 > 性健康：其他	定價與可負擔性倡議 > 解決低收入及弱勢族群的費用負擔問題	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	定價與可負擔性倡議 > 倡導將產品納入給付清單/國家藥品目錄	100	National	Sometimes	119067399626
Adverse events and medication availability.	出血 > 出血性疾病：大多數類型	改善存取路徑 > 促進藥品/醫療保健的公平取得	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.	傳染性 > 傳染病：其他	診斷與藥品配送 > 確保藥物使用的安全性與有效性	1,000	National	Regularly	119044103374
Adverse events and medication availability.	出血 > 出血性疾病：大多數類型	診斷與藥品配送 > 確保藥物使用的安全性與有效性	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：大多數類型	診斷與藥品配送 > 參與臨床指引的制定	5,000	National	Regularly	119021710214
For example, in the development of clinical guidelines.	一般健康 > 性健康：其他	診斷與藥品配送 > 參與臨床指引的制定	1,000	National	Sometimes	119060973871
Introduction of newborn screening.	免疫 > 原發性免疫缺乏症	診斷與藥品配送 > 支援篩檢與早期發現	1,000	National	Regularly	119078084362
Member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	神經退化性 > 亨丁頓舞蹈症	機構治理 > 確保在政府諮詢機構中獲得代表性	5,000	National	Regularly	119012382661
Patient representation on the G-BA [Gemeinsamer Bundesausschuss – Federal Joint Committee] Pharmaceuticals Sub-Committee in Germany.	巨蟹座 > 癌症：卵巢癌	機構治理 > 確保在政府諮詢機構中獲得代表性	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].	巨蟹座 > 癌症：攝護腺	機構治理 > 確保在政府諮詢機構中獲得代表性	10,000	National	Regularly	119021721162
Representative on the Federal Joint Committee [Gemeinsamer Bundesausschuss] for physicians and statutory health insurers.	移植 > 移植：肝臟	機構治理 > 確保在政府諮詢機構中獲得代表性	5,000	National	Regularly	119035838851
Representative on the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	視覺障礙 > 視網膜疾病	機構治理 > 確保在政府諮詢機構中獲得代表性	10,000	National	Sometimes	119035839364
Patient representation on the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	未指定 > 未指定	機構治理 > 確保在政府諮詢機構中獲得代表性	10,000	National	Sometimes	119036152561
We are a member of the GBA [Gemeinsamer Bundesausschuss – Federal Joint Committee].	神經退化性 > 亨丁頓舞蹈症	機構治理 > 確保在政府諮詢機構中獲得代表性	1,000	National	Regularly	119036314886
A overarching role within the German statutory self-governing bodies.	稀有 > 罕見疾病：遺傳性	機構治理 > 確保在政府諮詢機構中獲得代表性	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].	巨蟹座 > 癌症：攝護腺	機構治理 > 確保在政府諮詢機構中獲得代表性	10,000	National	Regularly	119069535789
Involvement in the EHA [European Hematology Association].	巨蟹座 > 癌症：血液	機構治理 > 在多方利害關係人網絡中有效運作	5,000	National	Regularly	119036570540

德國

調查洞察

病患團體聲音

病患群組目標

病患團體如何與藥品監管機構互動

病患團體如何取得藥物

查看完整研究結果

下載範例報告