■骨质疏松性骨折会导致严重的健康并发症和死亡风险增加。注册研究可以提供更好的治疗选择,并通过提供有关疾病的有用信息来改善患者的预后。本研究描述了伊朗骨质疏松症登记的协议。
■本注册是一项前瞻性多中心队列研究,招募来自伊朗的骨质疏松症患者。该研究的纳入标准是根据研究的诊断标准诊断出患有原发性或继发性骨质疏松症的个体;将在本注册表中从门诊诊所识别和招募患者。所有诊断为原发性或继发性骨质疏松症的患者都是研究的目标人群。我们的预期样本量为1000名参与者,研究将持续至少2年。伊朗骨质疏松登记处的测量包括四个部分:(i)由特定问卷包测量的变量,(ii)骨矿物质密度(BMD,(iii)临床检查,和(Iv)实验室数据。最终问卷包包括“人口统计信息”,“社会经济地位”,“生活方式”,“生殖健康”,“病史和用药”,“骨质疏松诊断差距”,“骨质疏松的依从性和治疗差距”,“骨折史和跌倒风险评估”,\"FRAX®工具\",“住院和死亡结果”,“腰痛”,“住院史”,“对骨质疏松症的态度”,“骨质疏松症意识”,“骨质疏松症相关表现”,“生活质量(伊朗版SF12问卷)”,和“食物频率问卷(FFQ)”。此注册表的临床检查包括人体测量(包括身高,体重,体重指数(BMI),腰围,臀围,和右腕围),还有血压.基线问卷将在患者被诊断为骨质疏松症后立即填写,然后骨质疏松患者将每年定期随访。在后续访问中,可能随时间变化的变量将被更新。主要成果包括秋季登记,骨折,住院治疗,药物依从性,和死亡。还开发了基于网络的在线用户友好软件用于数据收集。在每次后续行动结束时,将与数据挖掘专家和流行病学家合作进行数据分析。
■伊朗骨质疏松登记处将是有关骨质疏松结果(即骨折,住院治疗,坚持,和国家一级的死亡),其结果将对肌肉骨骼疾病领域的政策制定者非常有益和实用。
UNASSIGNED: Osteoporotic fractures can result in significant health complications and an increased risk of death. Registry studies could provide better treatment options and improve patient outcomes by providing useful information about the disease. The present
study describes the protocol for an
osteoporosis registry in Iran.
UNASSIGNED: This registry is a prospective multicenter cohort study recruiting patients with
osteoporosis from Iran. The inclusion criteria of the
study are individuals diagnosed with primary or secondary
osteoporosis according to the diagnostic criteria of the study; patients will be identified and recruited from outpatient clinics in this registry. All patients diagnosed with primary or secondary
osteoporosis are the target population of the
study. Our expected sample size is 1000 participants and the
study will continue for at least 2 years. The measurements of the Iranian Osteoporosis Registry include four parts: (i) variables measured by the specific questionnaires package, (ii) bone mineral density (BMD, (iii) clinical examination, and (iv) lab data. The final questionnaire package includes \"demographics information\", \"socioeconomic status\", \"lifestyle\", \"reproductive health\", \"medical history and medication\", \"Osteoporosis diagnosis gap\", \"Osteoporosis adherence and treatment gap\", \"fracture history and fall risk assessment\", \"FRAX ® tool \", \"hospitalization and death outcomes\", \"low back pain\", \"hospitalization history\", \"attitude toward osteoporosis\", \"osteoporosis awareness\", \"osteoporosis related-performance\", \"quality of life (Iranian version of SF12 questionnaire )\", and \"food frequency questionnaire (FFQ)\". Clinical examination of this registry includes anthropometric measurements (including height, weight, body mass index (BMI), waist circumference, hip circumference, and right wrist circumference), and blood pressure. The baseline questionnaires will be filled out right after patients are diagnosed with osteoporosis and then osteoporotic patients will be followed up regularly on a yearly basis. In the follow-up visit, variables that may have changed over time are updated. The main outcomes include registration of fall, fracture, hospitalization, medication adherence, and death. An online web-based user-friendly software is also developed for data collection. Data analysis will be conducted with the collaboration of data-mining experts and epidemiologists at the end of each follow-up.
UNASSIGNED: The Iran Osteoporosis Registry will be a valuable source of information regarding osteoporosis outcomes (i.e. fractures, hospitalizations, adherence, and death at the national level), and its results will be very beneficial and practical for policy makers in the field of musculoskeletal diseases.