Registries.ncats.nih.gov

Learn What Is a Registry

WEBLearn What Is a Registry. Registries collect contact and demographic information, patient experience, clinical data, and other types of information. The patient, the patient’s …

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URL: https://registries.ncats.nih.gov/module/get-started/learn-about-registries/learn-what-is-a-registry/

Protected health information

WEBProtected health information includes all individually identifiable health information, including demographic data, medical histories, test results, insurance information, and …

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Know What Information to Collect

WEBContact information includes the name, phone number, and email address of the registry participant (usually either the patient or the patient’s parents/guardians). Demographic …

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Check Whether a Registry Exists

WEBTips for checking to see if a registry exists for your disease include the following: Search ClinicalTrials.gov by using the term “registry” and the name of your rare disease. …

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Pick a Data Collection Tool

WEBThis custom software is designed to capture and manage patient data, including features for clinical trials and collecting participant registry data. These tools tend to have a …

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Determine What Research is Being Done

WEBNIH RePORTer (Research Portfolio Online Reporting Tools) provides access to reports, data, and analyses of NIH research activities, including information on NIH expenditures …

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Identify Registry Stakeholders

WEBDetermine the main objectives of each stakeholder and clearly define the expected contributions for each role. Registry stakeholders may include the following: Patients …

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REDCap Sample Registry Platform

WEBAbout RaDaR. Home. Glossary. Disclaimer. Sitemap. HHS Vulnerability Disclosure. FOIA. OIG. Maintained by the National Center for Advancing Translational Sciences (NCATS)

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Learn What is Known About Your Disease

WEBGenetic and Rare Diseases Information Center (GARD) provides easy-to-understand information about rare and genetic diseases. GARD is a program of the National Center …

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Personally identifiable information

WEBPersonally identifiable information (PII) refers to information that can be used to distinguish or trace an individual’s identity, either alone (direct) or when combined with other …

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Protect Human Research Participants

WEBAn IRB is responsible for protecting the rights and welfare of people who participate in research studies. An IRB is a group of people with diverse backgrounds, such as …

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Create Your Registry Plan

WEBPlanning ahead is essential to establish clear goals for your registry and a strategy for collecting quality data. In this step you will define specific, detailed, and attainable goals …

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Patient preference information

WEBPatient preference information (PPI) refers to assessments of the relative desirability or acceptability to patients of specified alternatives or choices among outcomes or other …

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Informed consent form

WEBIn a clinical study, the informed consent form is the document used during the informed consent process that is the basis for explaining to potential subjects the potential risks …

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Decide on Demographic Questions

WEBDecide on Demographic Questions. Including demographic (e.g., age, sex, race/ethnicity) questions can help you learn more about the participants in your registry. The goals of …

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