HIM 220_Worksheet: National Registry Assignment
Please use Template provided.
Visit the National Institutes of Health’s registry list (scroll down to the list area in the middle of the page to access the registries) and choose one from the list. Conduct independent research on the registry of your choice and address the following based on your findings:
1. Which registry did you choose?
2. Who can participate in this registry?
3. Describe the history of this registry, including why it was formed.
4. Explain how this registry is funded.
5. Why are registries important to the healthcare field?
6. What types of information and data are sent to this registry?
7. What is secondary data and why is it important to the healthcare field in general?
8. Explain the type of policy that should be put in place to protect the information in your chosen registry’s system.
HIM 220 Module Six Worksheet
Visit the National Institutes of Health’s registry list (scroll down to the list area in the middle of the page to access the registries) and choose one from the list. Conduct independent research on the registry of your choice and address the following based on your findings:
1. Which registry did you choose?
2. Who can participate in this registry?
3. Describe the history of this registry, including why it was formed.
4. Explain how this registry is funded.
5. Why are registries important to the healthcare field?
6. What types of information and data are sent to this registry?
7. What is secondary data and why is it important to the healthcare field in general?
8. Explain the type of policy that should be put in place to protect the information in your chosen registry’s system.
HIM 220 Module Six Worksheet Guidelines and Rubric
Prompt: In this worksheet, you will choose a national registry from the National Institutes of Health’s registry list and research specific information on the registry, including secondary data and registry management. Download the Module Six Worksheet, complete it, and upload it for grading OR copy and paste the questions into your own Word document and submit to the instructor for grading.
Specifically, the following critical elements must be addressed:
● Participants ● History ● Funding ● Importance ● Information and Data ● Secondary Data ● Policy
Rubric
Guidelines for Submission: This assignment will be completed using the worksheet provided. All citations should be completed using APA format.
Critical Elements Proficient (100%) Needs Improvement (75%) Not Evident (0%) Value
Participants Correctly identifies the participants in the chosen registry
The participants identified for the chosen registry are incorrect
Does not identify any participants for the chosen registry
13
History Describes the history of the chosen registry and explains why the registry was formed
Describes the history of the registry and why it was formed, but description is lacking in detail or accuracy
Does not describe the history of the registry and why it was formed
13
Funding Explains how the chosen registry is funded
Explains how the chosen registry is funded, but information in the explanation is not correct or is lacking in detail
Does not explain how the chosen registry is funded
13
Importance Describes the reasons why registries are important to the healthcare field
Describes the reasons why registries are important to the healthcare field, but misses key items that should be included, or response contains inaccuracies
Does not describe the reasons why registries are important to the healthcare field
13
Information and Data Identifies the types of information and
data that are sent to the chosen registry
Identifies the types of information and data that are sent to the chosen registry, but information included is inaccurate or response lacks detail
Does not identify the types of information and data that are sent to the chosen registry
13
Secondary Data Defines secondary data and explains why it is important to the healthcare field
Definition of secondary data and explanation of why it is important to the healthcare field is missing important key points or contains inaccuracies
Does not define secondary data and/or explain why it is important to the healthcare field
13
Policy Explains the policy type that should be put in place to protect the information in the chosen registry
Explains the policy type that should be put in place to protect the information in the chosen registry, but the chosen policy type does not represent the best choices for the registry, or explanation lacks detail
Does not explain the policy type that should be put in place to protect the information in the chosen registry
13
Articulation of Response
Submission has no major errors related to citations, grammar, spelling, syntax, or organization
Submission has major errors related to citations, grammar, spelling, syntax, or organization that negatively impact readability and articulation of main ideas
Submission has critical errors related to citations, grammar, spelling, syntax, or organization that prevent understanding of ideas
9
Total 100%
6/7/2020 List of Registries | National Institutes of Health (NIH)
https://www.nih.gov/health-information/nih-clinical-research-trials-you/list-registries 1/5
Get the latest public health information from CDC: https://www.coronavirus.gov
Get the latest research information from NIH: https://www.nih.gov/coronavirus
List of Registries
Frequently Asked Questions
What is a registry?
Why are registries needed?
It sounds like these registries collect personal health information. Is there a risk that such information could be disclosed?
What benefits will someone receive from participating in a registry?
Who has access to the information in a registry?
Who owns the data from a registry? Who makes decisions about how these data will be used?
Can a participant withdraw from the registry?
Who should the participant contact with additional questions or concerns?
How is a registry different from a clinical trial?
List of Registries
Disclaimer: The following listing is not intended to be comprehensive, and the inclusion of any particular organization on this list does not imply endorsement by the National Institutes
of Health or the Department of Health and Human Services. Our intent is to provide information about registry efforts at the national level and therefore have not included many local
groups that can offer valuable assistance to individuals, their families within a limited geographic area.
COVID-19 is an emerging, rapidly evolving situation.
NIH CLINICAL RESEARCH TRIALS AND YOU
6/7/2020 List of Registries | National Institutes of Health (NIH)
https://www.nih.gov/health-information/nih-clinical-research-trials-you/list-registries 2/5
Alzheimer’s Prevention Registry
Breast Cancer Surveillance Consortium
Cancer Genetics Network
Caring for COVID-19 Transplant Patients
CASCADE FH Registry
The Cerebral Palsy Research Network
Cerebral Palsy Research Registry (CPRR)
Children’s Health Foundation Pediatric Asthma Registry
Clinical Trials Public Data Share Website
Collaborative Islet Transplant Registry
Colon Cancer Family Registry
Congenital Heart Disease Genetic Network Study (CHD GENES)
Congenital Muscle Disease International Registry (CMDIR)
Consoritum for the Longitudinal Evaluation of African-Americans with Early Rheumatoid Arthritis
Cure RTD Foundation
Cystic Fibrosis Foundation Patient Registry
Development of a National Incompatible Kidney Transplant Registry
Development of a Pediatric Myelodysplastic Syndrome Patient Registry
Development of an Infertility Family Registry (IFRR)
Dominantly Inherited Alzheimer Network (DIAN) — Expanded Registry
Drug Inducted Liver Injury Network (DILIN)
DS-Connect
: The Down Syndrome Registry
Dyskeratosis Congenita and Telomere Biology Disorders
The Environmental Polymorphisms Registry (EPR) — Using DNA to Study Disease
6/7/2020 List of Registries | National Institutes of Health (NIH)
https://www.nih.gov/health-information/nih-clinical-research-trials-you/list-registries 3/5
eyeGENE : The National Ophthalmic Disease Genotyping and Phenotyping Network
FD/MAS Patient Registry
Fecal Microbiota Transplant National Registry
Foundation for Sarcoidosis Patient Registry
Gastric Cancer Registry
GenomeConnect
Rare Diseases Registry Program (RaDaR)
IMPACT Registry, diagnostic and interventional cardiac catheterization in congenital heart disease
Inherited bone marrow failure syndrome
Interagency Registry for Mechanically Assisted Circulatory Support (INTERMACS)
International Registry of Coronavirus Exposure in Pregnancy…
