FRONTotemporal dementia Incidence European Research Study-FRONTIERS: Rationale and design.

FRONTotemporal dementia Incidence European Research Study-FRONTIERS: Rationale and design.
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DOI:
10.1002/alz.12414
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发表时间:
2022-03
影响因子:
14
通讯作者:
Logroscino, Giancarlo
Logroscino, Giancarlo
中科院分区:
医学1区
文献类型:
--
作者:
Borroni, Barbara;Graff, Caroline;Hardiman, Orla;Ludolph, Albert C.;Moreno, Fermin;Otto, Markus;Piccininni, Marco;Remes, Anne M.;Rowe, James B.;Seelaar, Harro;Stefanova, Elka;Traykov, Latchezar;Logroscino, Giancarlo

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额颞叶变性(FTLD)相关疾病的发病率及其特征尚不清楚。“欧洲额颞叶痴呆发病率研究”(FRONTIERS)旨在填补这一空白。FRONTIERS是一项基于多国登记的欧洲前瞻性观察性人口研究。FRONTIERS在欧洲拥有11个三级转诊中心,在FTLD相关疾病和全面的区域转诊网络方面有着长期的经验,能够在明确的地理区域内进行发病率估计。主要终点是(1)全欧洲FTLD相关疾病的发生率;(2) FTLD相关疾病的地理趋势;(3)欧洲不同人群和种族的FTLD表型分布;(4) FTLD相关疾病的遗传,包括与总体疾病负担相比的单基因FTLD的频率;(5)临床和生物材料数据库的实施。前沿将提高对FTLD相关疾病及其流行病学的认识,促进适当的公共卫生服务政策和治疗策略。
The incidence of Frontotemporal Lobar Degeneration (FTLD)–related disorders and their characteristics are not well known. The “FRONTotemporal dementia Incidence European Research Study” (FRONTIERS) is designed to fill this gap. FRONTIERS is a European prospective, observational population study based on multinational registries. FRONTIERS comprises 11 tertiary referral centers across Europe with long‐lasting experience in FTLD‐related disorders and comprehensive regional referral networks, enabling incidence estimation over well‐defined geographical areas. The primary endpoints are (1) the incidence of FTLD‐related disorders across Europe; (2) geographic trends of FTLD‐related disorders; (3) the distribution of FTLD phenotypes in different populations and ethnicities in Europe; (4) inheritance of FTLD‐related disorders, including the frequencies of monogenic FTLD as compared to overall disease burden; and (5) implementation of data banking for clinical and biological material. FRONTIERS will improve the understanding of FTLD‐related disorders and their epidemiology, promoting appropriate public health service policies and treatment strategies.
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