scholarly journals Registries of parathyroid glands diseases in the Russian Federation

2021 ◽  
Vol 67 (4) ◽  
pp. 4-7
Author(s):  
N. G. Mokrysheva ◽  
E. V. Kovaleva ◽  
A. K. Eremkina
Keyword(s):  
Diabetes Mellitus ◽  
Primary Hyperparathyroidism ◽  
Patient Reported Outcomes ◽  
Large Scale ◽  
Epidemiological Data ◽  
Parathyroid Glands ◽  
Basic Information ◽  
Endocrine Diseases ◽  
Patient Reported ◽  
The Russian Federation

The most important and effective way to organize nationwide the healthcare, as well as monitoring and routing for patients with endocrine diseases, is the creation of an unified medical record (Endocard). The Endocard is also aimed at maximizing the opportunity for professionals and researchers on various scientific issues. Registries are the potential informational and analytical platform to achieve this goal. They include the basic information on the epidemiological and clinical features of the most severe diseases such as diabetes mellitus. Given the lack of large-scale epidemiological data on the parathyroid glands pathology — primary hyperparathyroidism and hypoparathyroidism — the registers of these diseases that collects a common dataset and clinician and patient reported outcomes are of particular interest.

scholarly journals Sleep Tracking and Exercise in Patients With Type 2 Diabetes Mellitus (Step-D): Pilot Study to Determine Correlations Between Fitbit Data and Patient-Reported Outcomes (Preprint)

2017 ◽  
Author(s):  
James Weatherall ◽  
Yurek Paprocki ◽  
Theresa M Meyer ◽  
Ian Kudel ◽  
Edward A Witt
Keyword(s):  
Physical Activity ◽  
Diabetes Mellitus ◽  
Type 2 Diabetes ◽  
Type 2 Diabetes Mellitus ◽  
Pilot Study ◽  
Patient Reported Outcomes ◽  
Sleep Problems ◽  
Health Data ◽  
Patient Reported

BACKGROUND Few studies assessing the correlation between patient-reported outcomes and patient-generated health data from wearable devices exist. OBJECTIVE The aim of this study was to determine the direction and magnitude of associations between patient-generated health data (from the Fitbit Charge HR) and patient-reported outcomes for sleep patterns and physical activity in patients with type 2 diabetes mellitus (T2DM). METHODS This was a pilot study conducted with adults diagnosed with T2DM (n=86). All participants wore a Fitbit Charge HR for 14 consecutive days and completed internet-based surveys at 3 time points: day 1, day 7, and day 14. Patient-generated health data included minutes asleep and number of steps taken. Questionnaires assessed the number of days of exercise and nights of sleep problems per week. Means and SDs were calculated for all data, and Pearson correlations were used to examine associations between patient-reported outcomes and patient-generated health data. All respondents provided informed consent before participating. RESULTS The participants were predominantly middle-aged (mean 54.3, SD 13.3 years), white (80/86, 93%), and female (50/86, 58%). Use of oral T2DM medication correlated with the number of mean steps taken (r=.35, P=.001), whereas being unaware of the glycated hemoglobin level correlated with the number of minutes asleep (r=−.24, P=.04). On the basis of the Fitbit data, participants walked an average of 4955 steps and slept 6.7 hours per day. They self-reported an average of 2.0 days of exercise and 2.3 nights of sleep problems per week. The association between the number of days exercised and steps walked was strong (r=.60, P<.001), whereas the association between the number of troubled sleep nights and minutes asleep was weaker (r=.28, P=.02). CONCLUSIONS Fitbit and patient-reported data were positively associated for physical activity as well as sleep, with the former more strongly correlated than the latter. As extensive patient monitoring can guide clinical decisions regarding T2DM therapy, passive, objective data collection through wearables could potentially enhance patient care, resulting in better patient-reported outcomes.

scholarly journals Responsiveness of Patient-Reported Outcomes to Treatment Among Patients With Type 2 Diabetes Mellitus and OSA

CHEST Journal ◽  
2020 ◽  
Vol 157 (3) ◽  
pp. 665-672 ◽  
Author(s):  
Lucas M. Donovan ◽  
Lan Yu ◽  
Suzanne M. Bertisch ◽  
Daniel J. Buysse ◽  
Michael Rueschman ◽  
...  
Keyword(s):  
Diabetes Mellitus ◽  
Type 2 Diabetes ◽  
Type 2 Diabetes Mellitus ◽  
Patient Reported Outcomes ◽  
Patient Reported

scholarly journals Primary hyperparathyroidism in Russia according to the registry

2019 ◽  
Vol 65 (5) ◽  
pp. 300-310 ◽  
Author(s):  
Natalya G. Mokrysheva ◽  
Svetlana S. Mirnaya ◽  
Ekaterina A. Dobreva ◽  
Irina S. Maganeva ◽  
Elena V. Kovaleva ◽  
...  
Keyword(s):  
Surgical Treatment ◽  
Primary Hyperparathyroidism ◽  
Medical Care ◽  
Russian Federation ◽  
Parathyroid Carcinoma ◽  
Large Scale ◽  
Active Phase ◽  
Symptomatic Disease ◽  
Number Of Patients ◽  
The Russian Federation

BACKGROUND: There are no large-scale epidemiological studies on primary hyperparathyroidism (PHPT) in Russia. The high prevalence of the disease, the high risk of disability and death in this cohort of patients requires the study of the epidemiological and clinical structure of PHPT to determine the extent of medical care. AIM: Evaluate the frequency of PHPT detection and characterize its clinical forms in Russia using an online registry. METHODS: The object of the study is the database of the State Register of Patients with PHPT 1914 patients from 71 regions of the Russian Federation. New cases of the disease, as well as dynamic indicators are recorded when patients visit outpatient clinics or medical institutions. The analysis of data made at the end of December 2017 was carried out. The following parameters were evaluated: demographic and clinical indicators; indicators of phosphorus-calcium metabolism, the main forms of PHPT and its course, the primary characteristic of PHPT in hereditary syndromes and parathyroid carcinoma. Results are presented as mean and standard deviations, or medians and quartiles; descriptive statistics of qualitative attributes absolute and relative frequencies. RESULTS: the total number of patients with PHPT in the registry on 31 of December 2017 was 1914 cases (0.001% of the population of the Russian Federation). Identification of PHPT was 1.3 cases per 100 thousand of the population in Russia, 7.6 cases in Moscow, 6.1 cases per 100 thousand in the Moscow region. The average age of patients at the time of diagnosis was 55.6 10 years. The active phase of the disease was registered in 84.6% of patients (1620/1914), most of whom had a symptomatic PHPT 67.1% (1087/1620), and 32.9% a asymptomatic disease (533/1620). Symptomatic disease with visceral complications was detected in 15.8% cases (172/1087), with bone complications in 48.4% (526/1087). The mixed form of the disease was detected in 35.8% of patients with manifest form (389/1087). Normocalcemic variant PHPT (nPHPT) was registered in 14.5% cases (234/1620). Sporadic PHPT occurs in 83% of cases (1592/1914). 326 patients (17%) had a suspicion for hereditary form of the disease: average age was 31.2 12.3 years. A genetic analysis was conducted in 61 patients (3.2%): showed the mutation in the MEN1 gene in 2.9% of cases (55/1914) and the mutation in the CDC73 gene in 0.3% of cases (6/1914) (HPT-JT syndrome). Parathyroid carcinoma was confirmed in 1.8% of all patients (35/1914). Surgical treatment was performed in 64.5% of patients (1234/1914). Remission was achieved in 94% of cases (1160/1234), in 6% of cases relapse after surgical treatment or persistence of PHPT was recorded. CONCLUSION: detection of PHPT in the Russian Federation raised in comparison to 2016, which is associated with an active start of registration of patients in the regions. At this stage, it is necessary to modify the principles of registration and control, to make a platform for gathering information and calculating the necessary volumes of medical care for PHPT patients.

scholarly journals RECUR – Aufbau eines automatisierten digitalen Registers für Patient*innen mit rezidivierenden Steinen des oberen Harntraktes

2021 ◽  
Vol 83 (S 01) ◽  
pp. S27-S32
Author(s):  
Tabea Walther ◽  
Erik Farin ◽  
Martin Boeker ◽  
Hans-Ulrich Prokosch ◽  
Harald Binder ◽  
...  
Keyword(s):  
Diabetes Mellitus ◽  
Patient Reported Outcomes ◽  
Smartphone App ◽  
Akute Schmerzen ◽  
Patient Reported

ZusammenfassungNierensteine werden wie Herz-Kreislauf-Erkrankungen und Diabetes mellitus aufgrund ihrer Häufigkeit zu den Volkskrankheiten gezählt. Erkrankte können durch akute Schmerzen, wiederholte Krankenhausaufenthalte und relevante Folgeerkrankungen belastet sein. Daraus folgen auch erhebliche Kosten, die Gesellschaft und Gesundheitssystem tragen müssen. Die Rezidivrate liegt bei 50%. Mit dem Register für RECurrente URolithiasis (RECUR) sollen bestehenden Evidenzlücken geschlossen werden. Dabei handelt es sich um ein prospektives longitudinales Register, dessen Aufbau und Implementierung vom Bundesministerium für Bildung und Forschung (BMBF) im Rahmen der Förderung „Aufbau modellhafter, patientenbezogener Register für die Versorgungsforschung“ finanziert wird. Es basiert auf der digitalen Infrastruktur der Medizininformatik-Initiative des BMBF. Ziel ist es, möglichst viele Patient*innen der 10 teilnehmenden Kliniken mit mehr als einer Nierenstein-Episode einzuschließen, um neue Erkenntnisse über Risikofaktoren, Diagnose- und Behandlungsalgorithmen zu erhalten. Im Rahmen des RECUR Projekts sollen neben klinischen Routinedaten auch „Patient Reported Outcomes“ von Patienten mit rezidivierenden Nierensteinen erhoben werden. Die Erhebung dieser Daten werden für alle teilnehmenden Standorte in Form von digitalen Fragebögen mithilfe einer Smartphone App durchgeführt und mit den medizinischen Daten aus dem Krankenhausinformationssystemen in pseudonymisierter Form zusammengeführt. Das RECUR-Register hat durch seinen vollständig föderierten, digitalen Ansatz einen modellhaften Charakter. Dieser ermöglicht die Rekrutierung vieler Patient*innen, die Erfassung eines breiten Datenspektrums und dessen Aufbereitung bei gleichzeitig geringem Verwaltungs- und Personalaufwand.

Sign in / Sign up

Export Citation Format

Share Document