scholarly journals Design, development and deployment of a web-based interoperable registry for inherited retinal dystrophies in Portugal: the IRD-PT

2020 ◽  
Vol 15 (1) ◽  
Author(s):  
João Pedro Marques ◽  
Ana Luísa Carvalho ◽  
José Henriques ◽  
Joaquim Neto Murta ◽  
Jorge Saraiva ◽  
...  
Keyword(s):  
Genetic Research ◽  
Quality Data ◽  
Design Development ◽  
Patient Registries ◽  
Real World Data ◽  
Web Based ◽  
Human Phenotype ◽  
Inherited Retinal Dystrophies ◽  
Retinal Dystrophies ◽  
User Friendly

Abstract Background The development of multicenter patient registries promotes the generation of scientific knowledge by using real-world data. A country-wide, web-based registry for inherited retinal dystrophies (IRDs) empowers patients and community organizations, while supporting formal partnerships research. We aim to describe the design, development and deployment of a country-wide, with investigators and stakeholders in the global aim to develop high-value, high-utility web-based, user-friendly and interoperable registry for IRDs—the IRD-PT. Results The IRD-PT is a clinical/genetic research registry included in the retina.pt platform (https://www.retina.com.pt), which was developed by the Portuguese Retina Study Group. The retina.pt platform collects data on individuals diagnosed with retinal diseases, from several sites across Portugal, with over 1800 participants and over 30,000 consultations to date. The IRD-PT module interacts with the retina.pt core system which provides a range of basic functions for patient data management, while the IRD-PT module allows data capture for the specific purpose of IRDs. All IRDs are coded accordingly to the International Statistical Classification of Diseases and Related Health Problems (ICD) 9, ICD 10, ICD 11, and Orphanet Rare Disease Ontology (ORPHA codes) to make the IRD-PT interoperable with other IRD registries across the world. Furthermore, the genes are coded according to the Ontology of Genes and Genomes and Online Mendelian Inheritance in Man, whereas signs and symptoms are coded according to the Human Phenotype Ontology. The IRD-PT module pre-launched at Centro Hospitalar e Universitário de Coimbra, the largest reference center for IRDs in Portugal. As of April 1st 2020, finalized data from 537 participants were available for this preliminary analysis. Conclusions In the specific field of rare diseases, the use of registries increases research accessibility for individuals, while providing clinicians/investigators with a coherent data ecosystem necessary to boost research. Appropriate design and implementation of patient registries enables rapid decision making and ongoing data mining, ultimately leading to improved patient outcomes. We have described here the principles behind the design, development and deployment of a web-based, user-friendly and interoperable software tool aimed to generate important knowledge and collecting high-quality data on the epidemiology, genomic landscape and natural history of IRDs in Portugal.

scholarly journals Design, Development and Deployment of a Web-Based Interoperable Registry for Inherited Retinal Dystrophies in Portugal – the IRD-PT

2020 ◽  
Author(s):  
João Pedro Marques ◽  
Ana Luísa Carvalho ◽  
José Henriques ◽  
Joaquim Neto Murta ◽  
Jorge Saraiva ◽  
...  
Keyword(s):  
Genetic Research ◽  
Quality Data ◽  
Design Development ◽  
Patient Registries ◽  
Real World Data ◽  
Web Based ◽  
Human Phenotype ◽  
Inherited Retinal Dystrophies ◽  
Retinal Dystrophies ◽  
User Friendly

Abstract BACKGROUND The development of multicenter patient registries promotes the generation of scientific knowledge by using real-world data. A country-wide, web-based registry for inherited retinal dystrophies (IRDs) empowers patients and community organizations, while supporting formal partnerships with investigators and stakeholders in the global aim to develop high-value, high-utility research. We aim to describe the design, development and deployment of a country-wide, web-based, user-friendly and interoperable registry for IRDs – the IRD-PT. RESULTS The IRD-PT is a clinical/genetic research registry included in the retina.pt platform (http://www.retina.com.pt), which was developed by the Portuguese Retina Study Group. The retina.pt platform collects data on individuals diagnosed with retinal diseases, from several sites across Portugal, with over 1800 participants and over 30,000 consultations to date. The IRD-PT module interacts with the retina.pt core system which provides a range of basic functions for patient data management, while the IRD-PT module allows data capture for the specific purpose of IRDs. All IRDs are coded accordingly to the International Statistical Classification of Diseases and Related Health Problems (ICD) 9, ICD 10, ICD 11, and Orphanet Rare Disease Ontology (ORPHA codes) to make the IRD-PT interoperable with other IRD registries across the world. Furthermore, the genes are coded according to the Ontology of Genes and Genomes and Online Mendelian Inheritance in Man, whereas signs and symptoms are coded according to the Human Phenotype Ontology. The IRD-PT module pre-launched at Centro Hospitalar e Universitário de Coimbra , the largest reference center for IRDs in Portugal. As of April 1 st 2020, finalized data from 537 participants were available for this preliminary analysis. CONCLUSIONS In the specific field of rare diseases, the use of registries increases research accessibility for individuals, while providing clinicians/investigators with a coherent data ecosystem necessary to boost research. Appropriate design and implementation of patient registries enables rapid decision making and ongoing data mining, ultimately leading to improved patient outcomes. We have described here the principles behind the design, development and deployment of a web-based, user-friendly and interoperable software tool aimed to generate important knowledge and collect high-quality data on the epidemiology, genomic landscape and natural history of IRDs in Portugal.

scholarly journals Design, Development And Deployment Of A Web-Based Interoperable Registry For Inherited Retinal Dystrophies In Portugal – The Ird-Pt

2020 ◽  
Author(s):  
João Pedro Marques ◽  
Ana Luísa Carvalho ◽  
José Henriques ◽  
Joaquim Neto Murta ◽  
Jorge Saraiva ◽  
...  
Keyword(s):  
Genetic Research ◽  
Quality Data ◽  
Design Development ◽  
Patient Registries ◽  
Real World Data ◽  
Web Based ◽  
Human Phenotype ◽  
Inherited Retinal Dystrophies ◽  
Retinal Dystrophies ◽  
User Friendly

Abstract BACKGROUNDThe development of multicenter patient registries promotes the generation of scientific knowledge by using real-world data. A country-wide, web-based registry for inherited retinal dystrophies (IRDs) empowers patients and community organizations, while supporting formal partnerships with investigators and stakeholders in the global aim to develop high-value, high-utility research. We aim to describe the design, development and deployment of a country-wide, web-based, user-friendly and interoperable registry for IRDs – the IRD-PT.RESULTSThe IRD-PT is a clinical/genetic research registry included in the retina.pt platform (http://www.retina.com.pt), which was developed by the Portuguese Retina Study Group. The retina.pt platform collects data on individuals diagnosed with retinal diseases, from several sites across Portugal, with over 1800 participants and over 30,000 consultations to date. The IRD-PT module interacts with the retina.pt core system which provides a range of basic functions for patient data management, while the IRD-PT module allows data capture for the specific purpose of IRDs. All IRDs are coded accordingly to the International Statistical Classification of Diseases and Related Health Problems (ICD) 9, ICD 10, ICD 11, and Orphanet Rare Disease Ontology (ORPHA codes) to make the IRD-PT interoperable with other IRD registries across the world. Furthermore, the genes are coded according to the Ontology of Genes and Genomes and Online Mendelian Inheritance in Man, whereas signs and symptoms are coded according to the Human Phenotype Ontology. The IRD-PT module pre-launched at Centro Hospitalar e Universitário de Coimbra, the largest reference center for IRDs in Portugal. As of April 1st 2020, finalized data from 537 participants were available for this preliminary analysis.CONCLUSIONSIn the specific field of rare diseases, the use of registries increases research accessibility for individuals, while providing clinicians/investigators with a coherent data ecosystem necessary to boost research. Appropriate design and implementation of patient registries enables rapid decision making and ongoing data mining, ultimately leading to improved patient outcomes. We have described here the principles behind the design, development and deployment of a web-based, user-friendly and interoperable software tool aimed to generate important knowledge and collecting high-quality data on the epidemiology, genomic landscape and natural history of IRDs in Portugal.

scholarly journals Design, Development and Deployment of a Web-Based Interoperable Registry for Inherited Retinal Dystrophies in Portugal -The Ird-Pt

2020 ◽  
Author(s):  
João Pedro Marques ◽  
Ana Luísa Carvalho ◽  
José Henriques ◽  
Joaquim Neto Murta ◽  
Jorge Saraiva ◽  
...  
Keyword(s):  
Genetic Research ◽  
Quality Data ◽  
Design Development ◽  
Patient Registries ◽  
Real World Data ◽  
Web Based ◽  
Human Phenotype ◽  
Inherited Retinal Dystrophies ◽  
Retinal Dystrophies ◽  
User Friendly

Abstract BACKGROUND: The development of multicenter patient registries promotes the generation of scientific knowledge by using real-world data. A country-wide, web-based registry for inherited retinal dystrophies (IRDs) empowers patients and community organizations, while supporting formal partnerships with investigators and stakeholders in the global aim to develop high-value, high-utility research. We aim to describe the design, development and deployment of a country-wide, web-based, user-friendly and interoperable registry for IRDs – the IRD-PT.RESULTS: The IRD-PT is a clinical/genetic research registry included in the retina.pt platform (http://www.retina.com.pt), which was developed by the Portuguese Retina Study Group. The retina.pt platform collects data on individuals diagnosed with retinal diseases, from several sites across Portugal, with over 1800 participants and over 30,000 consultations to date. The IRD-PT module interacts with the retina.pt core system which provides a range of basic functions for patient data management, while the IRD-PT module allows data capture for the specific purpose of IRDs. All IRDs are coded accordingly to the International Statistical Classification of Diseases and Related Health Problems (ICD) 9, ICD 10, ICD 11, and Orphanet Rare Disease Ontology (ORPHA codes) to make the IRD-PT interoperable with other IRD registries across the world. Furthermore, the genes are coded according to the Ontology of Genes and Genomes and Online Mendelian Inheritance in Man, whereas signs and symptoms are coded according to the Human Phenotype Ontology. The IRD-PT module pre-launched at Centro Hospitalar e Universitário de Coimbra, the largest reference center for IRDs in Portugal. As of April 1st 2020, finalized data from 537 participants were available for this preliminary analysis. CONCLUSIONS: In the specific field of rare diseases, the use of registries increases research accessibility for individuals, while providing clinicians/investigators with a coherent data ecosystem necessary to boost research. Appropriate design and implementation of patient registries enables rapid decision making and ongoing data mining, ultimately leading to improved patient outcomes. We have described here the principles behind the design, development and deployment of a web-based, user-friendly and interoperable software tool aimed to generate important knowledge and collecting high-quality data on the epidemiology, genomic landscape and natural history of IRDs in Portugal.

scholarly journals Exceptional Data Quality using Intelligent Matching and Retrieval

AI Magazine ◽  
2010 ◽  
Vol 31 (1) ◽  
pp. 65 ◽  
Author(s):  
Clint R. Bidlack ◽  
Michael P Wellman
Keyword(s):  
Data Quality ◽  
Real Time ◽  
Data Migration ◽  
Quality Data ◽  
Sales Managers ◽  
Web Based ◽  
Sales And Marketing ◽  
Retrieval Algorithms ◽  
Marketing Operations ◽  
User Friendly

Recent advances in enterprise web-based software have created a need for sophisticated yet user-friendly data quality solutions. A new category of data quality solutions are discussed that fill this need using intelligent matching and retrieval algorithms. Solutions are focused on customer and sales data and include real-time inexact search, batch processing, and data migration. Users are empowered to maintain higher quality data resulting in more efficient sales and marketing operations. Sales managers spend more time with customers and less time managing data.

scholarly journals AB0951 THE ITALIAN FIBROMYALGIA REGISTRY: A NEW WAY OF USING ROUTINE REAL-WORLD DATA CONCERNING PATIENT-REPORTED DISEASE STATUS IN HEALTHCARE RESEARCH AND CLINICAL PRACTICE

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1773.2-1773
Author(s):  
F. Salaffi ◽  
S. Farah ◽  
V. Giorgi ◽  
P. Sarzi-Puttini
Keyword(s):  
Clinical Practice ◽  
Real World ◽  
Quality Data ◽  
Study Patient ◽  
Italian Population ◽  
Real World Data ◽  
Web Based ◽  
World Data ◽  
American College Of Rheumatology ◽  
Distress Scale

Background:Fibromyalgia (FM), the most frequently encountered cause of widespread musculoskeletal pain, affects an estimated 2% of the general Italian population. However, it is not a homogeneous clinical entity, and a number of interacting factors can influence patient prognosis and the outcomes of standardised treatment programmes. Registries are a source of high-quality data for clinical research, but relating this information to individual patients is technically challenging.Objectives:The aim of this article is to describe the structure and objectives of the first Italian Fibromyalgia Registry (IFR), a new web-based registry of patients with FM.Methods:The IFR was developed to collect, store, and share information electronically entered by physicians throughout Italy who are members of the Italian Society of Rheumatology and have a particular interest in FM. It has a web-based architecture that uses two separate servers and an encryption algorithm to ensure the confidentiality and integrity of the exchanged data. The questionnaires included on the platform are the Revised Fibromyalgia Impact Questionnaire (FIQR), the modified Fibromyalgia Assessment Status (ModFAS), and the Polysymptomatic Distress Scale (PDS).Results:The registry includes data relating to 2,339 patients (93.2% female) who satisfied the 1990 or 2010/2011 American College of Rheumatology Classification Criteria for Fibromyalgia at the time of diagnosis. At the time of this analysis, the patients had a mean age of 51.9 years (SD 11.5) and a mean disease duration of 7.3 years (SD 6.9). The majority were married (71.3%), and generally well educated. The overall median FIQR, ModFAS and PDS scores and 25th-75thpercentiles were respectively 61.16 (41.16-77.00), 8.91 (41.16-77.00), and 19.0 (13.00-24.00). The six highest scoring items indicating the greatest impact of the disease on the patients related to fatigue/energy (7.18), sleep quality (6.87), tenderness (6.69), pain (6.68), stiffness (6.66), and environmental sensitivity (6.35). A high proportion of the responding patients reported experiencing pain in the neck (80.46%), upper back (68.36%), and lower back (75.05%).Conclusion:The IFR is the most comprehensive FM registry in Italy, and provides healthcare professionals with a secure, reliable, and easy-to-use means of monitoring the patients’ clinical progression, treatment history and treatment responses. This can help clinicians to plan patient management, facilitates research study patient recruitment, and provides the participating pain clinics with statistics based on real-world data. It also helps address the Italian Ministry of Health long-term goal of using precision medicine for chronic pain prevention and treatment. It is hoped that the IFR will enhance both scientific research and clinical practice.References:[1]Drolet BC, Johnson KB: Categorizing the world of registries 2008; 41: 1009–20.[2]Martinez JE, Paiva ES, Rezende MC, Heymann RE, Helfenstein M, Ranzolin A, et al.: EpiFibro (Brazilian Fibromyalgia Registry): data on the ACR classification and diagnostic preliminary criteria fulfillment and the follow-up evaluation. 2017; 57: 129–33[3]Whipple MO, McAllister SJ, Oh TH, Luedtke CA, Toussaint LL, Vincent A: Construction of a US fibromyalgia registry using the Fibromyalgia Research Survey criteria. 2013; 6: 398–99[4]Wolfe F, Smythe HA, Yunus MB, Bennett RM, Bombardier C, Goldenberg D, et al.: The American College of Rheumatology 1990 Criteria for the Classification of Fibromyalgia. Report of the Multicenter Criteria Committee. 1990; 33: 160–72Disclosure of Interests:None declared

scholarly journals Let's get real about virtual: online health is here to stay

2013 ◽  
Vol 95 (4) ◽  
pp. 111-113 ◽  
Author(s):  
BARBARA PRAINSACK
Keyword(s):  
Medical Practice ◽  
Genetic Research ◽  
Academic Research ◽  
The Internet ◽  
Web Based ◽  
Disease Research ◽  
Recent Developments ◽  
Research User ◽  
Low Threshold ◽  
User Friendly

SummaryA lot has been written about the opportunities of the Internet for medicine, and lately, also for disease research specifically. Although it remains to be seen how significant and sustainable a change this will result in, some recent developments are highly relevant for the area of genetic research. User-friendly, low-threshold web-based tools do not only provide information to patients and other users, but they also supply user-generated data that can be utilized by both medical practice and medical research. Many of these developments have been below the radar of mainstream academic research so far. Issues related to data quality and standardization, as well as data protection and privacy, still need to be addressed. Dismissing these platforms as fads of a tiny privileged minority risks missing the opportunity to have our say in these debates.

scholarly journals Efficient capture of high-quality real-world data on treatments for glaucoma: the Fight Glaucoma Blindness! Registry

2021 ◽  
Vol 6 (1) ◽  
pp. e000903
Author(s):  
Mitchell Lawlor ◽  
Vuong Nguyen ◽  
Anne Brooks ◽  
Colin Clement ◽  
Jamie E Craig ◽  
...  
Keyword(s):  
Data Collection ◽  
Real World ◽  
Steering Committee ◽  
Quality Data ◽  
Easy Access ◽  
Routine Practice ◽  
Real World Data ◽  
High Quality ◽  
Data Set ◽  
Web Based

ObjectiveTo describe the development and implementation of a web-based high-quality data collection tool to track the outcomes of glaucoma treatments in routine practice.Methods and analysisThis is a prospective observational registry study. An international steering committee undertook an iterative structured process to define a minimum, patient-centred data set designed to track outcomes of glaucoma treatment. The outcomes were coded into a web-based programme allowing easy access for rapid data entry. Clinicians receive personal reports enabling instant audit of their outcomes. Analyses of aggregated anonymised data on real-world outcomes are analysed and periodically reported with the goal of improving patient care.ResultsThe minimum data set developed by the international steering committee includes the following: a baseline visit captures 13 mandatory fields in order to accurately phenotype each patient’s subtype of glaucoma and to allow comparison between services, and a follow-up visit includes only four mandatory fields to allow completion within 30 s.Currently, there are 157 surgeons in 158 ophthalmology practices across Australia and New Zealand who are registered. These surgeons are tracking 5570 eyes of 3001 patients and have recorded 67 074 visits. The median number of eyes per surgeon is 22 eyes with a range of 1–575. The most common glaucoma procedure, excluding cataract surgery, is iStent inject, with 2316 cases.ConclusionThis software tool effectively facilitates data collection on safety and efficacy outcomes of treatments for different subgroups of glaucoma within a real-world setting. It provides a template to evaluate new treatments as they are introduced into practice.

The Role of Web Based Accounting Online System 2.0 as the Company's Income and Expense Management

2017 ◽  
Vol 1 (1) ◽  
pp. 44-49
Author(s):  
Nur Azizah ◽  
Dedeh Supriyanti ◽  
Siti Fairuz Aminah Mustapha ◽  
Holly Yang
Keyword(s):  
Financial Management ◽  
Accounting System ◽  
Bank Account ◽  
Web Based ◽  
Online System ◽  
Version 2.0 ◽  
User Friendly ◽  
The Impact ◽  
A Company

In a company, the process of income and expense of money must have a profit-generating goal base. The success of financial management within the company, can be monitored from the ability of the financial management in managing the finances and utilize all the opportunities that exist with as much as possible with the aim to control the company's cash (cash flow) and the impact of generating profits in accordance with expectations. With a web-based online accounting system version 2.0, companies can be given the ease to manage money in and out of the company's cash. It has a user friendly system with navigation that makes it easy for the financial management to use it. Starting from the creation of a company's cash account used as a cash account and corporate bank account on the system, deletion or filing of cash accounts, up to the transfer invoice creation feature, receive and send money. Thus, this system is very effective and efficient in the management of income and corporate cash disbursements.   Keywords:​Accounting Online System, Financial Management, Cash and Bank

Web-Based Peer and Self-Assessment System Design and Development for Elementary School Students

2018 ◽  
Vol 3 (1) ◽  
Author(s):  
Mehmet EMIN KORTAK
Keyword(s):  
Elementary School ◽  
Elementary School Students ◽  
Primary Schools ◽  
Peer Assessment ◽  
Assessment System ◽  
Assessment Process ◽  
School Students ◽  
Self Assessment ◽  
Web Based ◽  
User Friendly

This research aimed at designing and improving the web-based integrated peer and self- assessment. WesPASS (web-based peer-assessment system), developed in this research, allows students to assess their own or their peers’ performance and project assignments and to report about the result of these assessments so that they correct their assignments. This study employed design-based research. The participants included 102 fourth grade primary school students and their 4 teachers from 2 state and 2 private primary schools in Ankara, Kecioren (Turkey) who employed the system and were engaged in a questionnaire survey to assess its quality. The findings were analyzed through quantitative data analysis. The findings revealed that the system can be used by elementary school students for peer and self-assessment system. The participants stated that WesPASS is simple and user-friendly, and it accelerates the assessment process by employing information technology and allows to share opinions 

scholarly journals NRL S50T mutation and the importance of ‘founder effects’ in inherited retinal dystrophies

2000 ◽  
Vol 8 (10) ◽  
pp. 783-787 ◽  
Author(s):  
David AR Bessant ◽  
Annette M Payne ◽  
Catherine Plant ◽  
Alan C Bird ◽  
Anand Swaroop ◽  
...  
Keyword(s):  
Founder Effects ◽  
Inherited Retinal Dystrophies ◽  
Retinal Dystrophies
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