Tag: patient care

COVID-19 Global Rheumatology Alliance aim to collect, analyze and disseminate information about COVID-19 and rheumatology to patients, physicians and other relevant groups to improve the care of patients with rheumatic disease.

The Extracorporeal Life Support Organization (ELSO) is providing the ExtraCorporeal Membrane Oxygenation (ECMO) in COVID-19 website as a resource for centers who may be called on to manage COVID-19 patients.

The CARE guidelines provide a framework that supports transparency and accuracy in the publication of case reports and the reporting of information from patient encounters. The publication of case reports following the CARE guidelines will provide pr ...

COVID-19 Dermatology registry aims at collect cases of COVID-19 cutaneous manifestations. The registry is open to medical professionals only, from any specialty.

The European Renal Association COVID-19 Database is a European database collecting clinical information of patients on kidney replacement therapy with COVID-19.

SECURE-Cirrhosis Registry is a secure, online, de-identified Personal Health Identifier (PHI)-free reporting registry for patients with chronic liver disease and post-liver transplantation

COVID-HEP Registry is a universal and collaborative registry project to collect data on patients with liver disease at any stage or liver transplants who develop laboratory-confirmed COVID-19. We are pleased to encourage reports from worldwide. Howev ...

VIRUS is a cross-sectional, observational study and registry of all eligible adult and pediatric patients who are admitted to a hospital.

The International Classification for Patient Safety (ICPS) is intended to define, harmonize and group patient safety concepts into an internationally agreed classification in a way that is conducive to learning and improving patient safety across sys ...

PRIORITY (Pregnancy CoRonavIrus Outcomes RegIsTrY) is a nationwide study of pregnant or recently pregnant people who are either under investigation for Coronavirus infection (COVID-19) or have been confirmed to have COVID-19. This study is being done ...

Given the interest in the emerging and evolving coronavirus (COVID-19) pandemic and the questions regarding how this will impact patients with atopic dermatitis (AD) or alopecia who are treated with or without systemic immunomodulating medication, we ...

This ontology covers the domain of social entities that are related to health care, such as demographic information (social entities for recording gender (but not sex) and marital status, for example) and the roles of various individuals and organiza ...

PDX Finder is an open repository for the upload and storage of clinical, genomic and functional Patient-Derived Xenograph (PDX) data which provides a comprehensive global catalogue of PDX models available for researchers across distributed repository ...

The symptom ontology was designed around the guiding concept of a symptom being: "A perceived change in function, sensation or appearance reported by a patient indicative of a disease". There is a close relationship between Signs and Symptoms, where ...

COViMS (COVID-19 Infections in MS & Related Diseases) is a joint effort of the National MS Society, Consortium of MS Centers and Multiple Sclerosis Society of Canada to capture information on outcomes of people with MS and other CNS demyelinating dis ...

The International Classification of Primary Care, 2nd Edition (ICPC-2) classifies patient data and clinical activity in the domains of General/Family Practice and primary care, taking into account the frequency distribution of problems seen in these ...

Surveillance Epidemiology of Coronavirus Under Research Exclusion (SECURE-Psoriasis) is an international, pediatric and adult registry to monitor and report on outcomes of COVID-19 occurring in psoriasis patients.

The Activities of Daily Living Ontology is available for use in the SPHERE (Sensor Platform for HEalth in a Residential Environment) system to capture and express daily behaviour and activities among patients.

MDM-Portal (Medical Data-Models) is a meta-data registry for creating, analysing, sharing and reusing medical forms, developed by the Institute of Medical Informatics, University of Muenster in Germany. see also http://www.ncbi.nlm.nih.gov/pubmed/268 ...

The GISAID Initiative promotes the international sharing of all influenza virus sequences, related clinical and epidemiological data associated with human viruses, and geographical as well as species-specific data associated with avian and other anim ...

The American Society of Clinical Oncology (ASCO) Survey on COVID-19 in Oncology Registry (ASCO Registry) aims to help the cancer community learn more about the patterns of symptoms and severity of COVID-19 among patients with cancer, as well as how C ...

The ISARIC-WHO Case Record Form (CRF) should be used to collect data on suspected or confirmed cases of COVID-19. This form is in use across dozens of countries and research consortia including SPRINT SARI, ALERRT and Global CCP, aligning the collect ...

As physicians, scientists and researchers worldwide struggle to understand the novel coronavirus (COVID-19) pandemic, the American Heart Association (AHA) is developing a novel registry to aggregate data and aid research on the disease, treatment pro ...

The Multiple Sclerosis International Federation (MSIF) and the Multiple Sclerosis Data Alliance (MSDA) have teamed up to form a Global Data Sharing Initiative to achieve insights on the effect of COVID-19 in people with MS as fast as possible, with t ...

This registry is designed to capture pediatric and adult COVID-19 cases that are occurring across the world in patients living with sickle cell disease. The goal of the registry is to report on outcomes of cases of COVID-19 in this population of pati ...

Surveillance Epidemiology of Coronavirus Under Research Exclusion (SECURE-Celiac) is an international, pediatric and adult database to monitor and report on outcomes of COVID-19 occurring in patients with celiac disease. We encourage clinicians world ...

In March the NEAT ID Foundation initiated the development of a simple Data “Dashboard” to monitor the progress of COVID-19 in HIV infected patients across Europe in real time. The Dashboard shows at European and Country level the number of cases repo ...

The ASH Research Collaborative (ASH RC) COVID-19 Registry for Hematology, a global public reference tool that is part of the ASH RC Data Hub platform, captures data on individuals who test positive for COVID-19, have a hematologic condition (past or ...

A uniform core set of data elements (whose formal semantics are captured in OWL) for use in a Computer-Based Patient Record (CPR).

An application ontology devoted to the standardized recording of phenotypic data related to hemorrhagic disorders.

The International Classification for Nursing Practice (INCP) was accepted by WHO within the WHO Family of International Classifications (FIC) to extend the coverage of the domain of nursing practice as an essential and complementary part of professio ...

CAPACITY-COVID is a registry of patients with COVID-19, their history of cardiovascular disease and the occurrence of cardiovascular complications in COVID-19 patients. CAPACITY uses an extension of the CRF released by the ISARIC and WHO in response ...

Semantic data model of the set of common data elements for rare disease registration. To make rare disease registry data Interoperable (the 'I' in FAIR). Version 2.0. License CC0. Here, we present a semantic data model of the set of common data eleme ...

The FREEBIRD website aims to facilitate data sharing in the area of injury and emergency research in a timely and responsible manner. It has been launched by providing open access to anonymised data on over 30,000 injured patients (the CRASH-1 and CR ...

The Health Data Research Innovation Gateway (the ‘Gateway’) provides a common entry point to discover and enquire about access to UK health datasets for research and innovation. It provides detailed information about the datasets, which are held by m ...