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NCT03167450 · ClinicalTrials.gov registry record

Examining the Knowledge, Attitudes, and Beliefs of Sickle Cell Disease Patients, Parents of Patients With Sickle Cell Disease, and Providers Towards the Integration of CRISPR in Clinical Care

A clinical trial of Sickle Cell Disease, sponsored by National Human Genome Research Institute (NHGRI).

Completed
Registry status
109
Enrollment target
1
Study location

NCT03167450 is a study of Sickle Cell Disease that has completed, run by National Human Genome Research Institute (NHGRI). The registered enrollment target is 109 participants, below the 292-participant average among 213 other Sickle Cell Disease trials with a reported enrollment target (63% lower). The trial reports 1 study location across 1 state.

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The verdict

NCT03167450, a study of Sickle Cell Disease, has completed, sponsored by National Human Genome Research Institute (NHGRI).

COMPLETED
Registry status
109 participants
Enrollment target
1
Study location

Study Summary

Background: Sickle cell disease (SCD) is caused by a genetic defect that affects how hemoglobin is made. Due to this, people with SCD have abnormally-shaped red blood cells, which can result in poor oxygen transport in the body and increase risk of blood clots. CRISPR Cas9 is a new tool which allows scientists to snip and edit genes in a way that is faster, cheaper, and more precise than other gene-editing tools. Recently, research has been done using CRISPR Cas9 to correct the sickle cell gene in animal models and human cells. Researchers want to understand the views of those with SCD, parents of people with SCD, and the providers of these patients regarding use of CRISPR Cas9 in clinical trials and treatment. Objectives: To study the attitudes, beliefs, and opinions of those with SCD, parents of those with SCD, and providers on the use of CRISPR Cas9 gene-editing. An additional purpose of this study is to assess the utility of an educational tool for improving understanding of CRISPR Cas9. Eligibility: People ages 18 and older who speak English and either have SCD, are a parent of someone with SCD, or are a physician for people with SCD. Design: Participants will be screened via phone. Those with SCD will be screened with data from their SCD genotype. Participation lasts about 2 hours. Participants will fill out three surveys. Participants will watch a video about CRISPR Cas9. Participants will engage in a focus group session. This will be audiotaped and analyzed. The data from the survey questions and focus groups may be used for future research. However, all personally identifiable information will be removed before data is shared. Participants data will be identified with a code number instead of their name. Participants may be invited to join future studies of SCD.

Conditions Studied

Study Locations (1)

Maryland

  • National Human Genome Research Institute (NHGRI) - Bethesda

Trial Details

FieldValue
Enrollment Target 109 participants
Start Date 2017-04-28
Est. Completion 2021-02-05

What the Registry Record Tells You About NCT03167450

The ClinicalTrials.gov registry entry for NCT03167450 describes a study currently listed as completed, categorized as an unspecified phase. The registered enrollment target is 109 participants, a figure that helps gauge the scale of data the investigators plan to collect, below the 292-participant average among 213 other Sickle Cell Disease trials with a reported enrollment target (63% lower). The listed sponsor is National Human Genome Research Institute (NHGRI), which has 185 total studies on file at ClinicalTrials.gov.

The record links to 1 condition, with Sickle Cell Disease appearing as the primary indexed condition, and to 0 interventions.

NCT03167450 reports 1 study location spanning 1 distinct geographic area - top geographies include Maryland.

Frequently Asked Questions

What is clinical trial NCT03167450 about?

NCT03167450 is a clinical study titled "Examining the Knowledge, Attitudes, and Beliefs of Sickle Cell Disease Patients, Parents of Patients With Sickle Cell Disease, and Providers Towards the Integration of CRISPR in Clinical Care". Background: Sickle cell disease (SCD) is caused by a genetic defect that affects how hemoglobin is made. Due to this, people with SCD have abnormally-shaped red blood cells, which can result in poor oxygen transport in the body and increase risk of blood clots. CRISPR Cas9 is a new tool which allow...

What is the current status of trial NCT03167450?

This trial is currently completed. The enrollment target is 109 participants. The study started on 2017-04-28. Estimated completion is 2021-02-05.

What conditions does trial NCT03167450 study?

This clinical trial studies the following conditions: Sickle Cell Disease.

Who is sponsoring clinical trial NCT03167450?

This trial is sponsored by National Human Genome Research Institute (NHGRI), which has 185 total clinical trials registered on ClinicalTrials.gov.

Where is trial NCT03167450 being conducted?

This trial has 1 study location across Maryland. Contact the study sites directly through ClinicalTrials.gov for enrollment availability.

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Data sourced from official public datasets. See our methodology for details. Retrieved and formatted by PlainTrial

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