Plander Máté, Tajti János, Vécsei László, Szok Délia
Kiskunhalasi Semmelweis Kórház, Neurológiai osztály, Kiskunhalas.
Szegedi Tudományegyetem, Szent-Györgyi Albert Orvostudományi Kar, Neurológiai Klinika, Szeged.
Ideggyogy Sz. 2023 May 30;76(5-6):205-211. doi: 10.18071/isz.76.0205.
Using patient registries is essential both in clinical research and in medical practice. Headaches, more specifically migraines are one of the most common complaints that can detract the quality of a patient's life and these complaints also have a significant socio-economic effect. Our goal is to create a national Headache Registry and to also provide the pre-analysis of the registry's database.
Our research is based on the national Multiple Sclerosis Registry, which we modified using the latest version of diagnostic criteria published by the International Headache Society. This clinical study contains data collected from patients suffering from migraines and currently receiving care at the Headache Outpatient Department at the Neurologic Clinic of the University of Szeged.
The data of 412 patients (363 women and 49 men) suffering from migraine (migraine without aura: n = 313 and migraine with aura: n = 99) were added to the Headache Registry. The average age of participants was 44.1 ± 12.5 SD years. Regarding the attributes of migraine headaches we examined the following characteristics: localization, quality and intensity (based on the Visual Analogue Scale) of the pain, frequency (the number of headache days per month), medications (acute or prophylactic), comorbidities (depression, anxiety, hypertension, asthma, epilepsy and others), family history and the occurrence of stroke among patients.
Based on international experience, patient registries are the most optimal systems for structured patient monitoring. For high level management and long-term follow up of the patients the application of registries is essential. The registries include the detailed medical history and the diagnostic and therapeutic data of the patients, and they trace the changes during the follow up medical visits. Registries are able to record the entire course of the disease in digital way. The numerous data can be set out any time from the digital database. Extensive spread of patients' registries is fundamental not only in every day clinical practice, but also in clinical research.
使用患者登记系统在临床研究和医疗实践中都至关重要。头痛，尤其是偏头痛，是最常见的主诉之一，会降低患者的生活质量，且这些主诉还具有重大的社会经济影响。我们的目标是创建一个全国性的头痛登记系统，并对该登记系统的数据库进行预分析。
我们的研究基于全国性的多发性硬化症登记系统，并根据国际头痛协会发布的最新版诊断标准对其进行了修改。这项临床研究包含了从偏头痛患者中收集的数据，这些患者目前正在塞格德大学神经科诊所的头痛门诊接受治疗。
412例偏头痛患者（363名女性和49名男性）的数据（无先兆偏头痛：n = 313，有先兆偏头痛：n = 99）被纳入头痛登记系统。参与者的平均年龄为44.1±12.5标准差岁。关于偏头痛的属性，我们检查了以下特征：疼痛的部位、性质和强度（基于视觉模拟量表）、频率（每月头痛天数）、药物治疗（急性或预防性）、合并症（抑郁症、焦虑症、高血压、哮喘、癫痫等）、家族史以及患者中中风的发生情况。
根据国际经验，患者登记系统是结构化患者监测的最佳系统。对于患者的高级管理和长期随访，登记系统的应用至关重要。登记系统包含患者详细的病史以及诊断和治疗数据，并跟踪随访就诊期间的变化。登记系统能够以数字方式记录疾病的整个过程。大量数据可随时从数字数据库中调出。患者登记系统的广泛应用不仅在日常临床实践中至关重要，在临床研究中也是如此。
