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NCT04959188 · ClinicalTrials.gov registry record
Needs Assessment for Individuals and Families Affected by Dyskeratosis Congenita (DC) and Related Telomere Biology Disorders (TBD)
A clinical trial of Dyskeratosis Congenita and Telomere Biology Disorders, sponsored by National Cancer Institute (NCI).
- Completed
- Registry status
- 53
- Enrollment target
- 1
- Study location
NCT04959188: Completed study of Dyskeratosis Congenita and Telomere Biology Disorders, sponsored by National Cancer Institute (NCI).
NCT04959188 is a study of Dyskeratosis Congenita and Telomere Biology Disorders that has completed, run by National Cancer Institute (NCI). The registered enrollment target is 53 participants, below the 847-participant average among 7 other Dyskeratosis Congenita trials with a reported enrollment target (94% lower). The trial reports 1 study location across 1 state. According to ClinicalTrials.gov, the official US trial registry.
The verdict
NCT04959188, a study of Dyskeratosis Congenita and Telomere Biology Disorders, has completed, sponsored by National Cancer Institute (NCI).
- COMPLETED
- Registry status
- 53 participants
- Enrollment target
- 1
- Study location
Study Summary
Background: DC and related TBDs are a group of illnesses caused by variants in genes that regulate telomeres. These illnesses can cause problems with the skin and mucous membranes. They can also cause ophthalmic, dental, immunologic, and other abnormalities. Researchers want to learn more about these illnesses and the people who have them. Objective: To learn about the informational, pragmatic, and psychosocial challenges and unmet needs of individuals and families affected by DC and related TBDs. Eligibility: People aged 18 years and older who have DC or related TBD or who are, or have been, a caregiver to someone with DC or related TBD. Design: This study has 2 parts: a survey and a telephone interview. Participants may choose to take part in one or both parts. Participants may complete an online survey. They will select which group most applies to them: person with DC/TBD; parent/caregiver to a person with DC/TBD; or bereaved parent/caregiver of a person who had DC/TBD. The survey will be based on the group they choose. They will answer 20-30 questions. The survey will take 10-20 minutes to complete. Participants may take part in a phone interview. It will take 50-70 minutes to complete. They will give their name, email address, and phone number to schedule the interview. The interview will be audio recorded and transcribed. Personal identifiers will be removed.
Primary Outcome
Brief online survey consisting of questions that have been modified from the Needs Assessment of Family Caregivers-Cancer (NAFC-C) which has been validated in caregiver and bereaved populations.
Conditions Studied
Study Locations (1)
Maryland
- National Cancer Institute (NCI) - Bethesda
Trial Details
| Field | Value |
|---|---|
| Enrollment Target | 53 participants |
| Start Date | 2021-09-09 |
| Est. Completion | 2023-07-05 |
What the finished NCT04959188 record still lists
NCT04959188 is an observational study that tracks outcomes without assigning an intervention. The registry caps enrollment at 53 participants, a relatively small participant target, below the 847-participant average among 7 other Dyskeratosis Congenita trials with a reported enrollment target (94% lower).
The record links to 2 conditions, with Dyskeratosis Congenita appearing as the primary indexed condition, and to 0 interventions.
NCT04959188 reports a single indexed study location in Maryland.
Frequently Asked Questions
What is clinical trial NCT04959188 about?
NCT04959188 is a clinical study titled "Needs Assessment for Individuals and Families Affected by Dyskeratosis Congenita (DC) and Related Telomere Biology Disorders (TBD)". Background: DC and related TBDs are a group of illnesses caused by variants in genes that regulate telomeres. These illnesses can cause problems with the skin and mucous membranes. They can also cause ophthalmic, dental, immunologic, and other abnormalities. Researchers want to learn more about the...
What is the current status of trial NCT04959188?
This trial is currently completed. The enrollment target is 53 participants. The study started on 2021-09-09. Estimated completion is 2023-07-05.
What conditions does trial NCT04959188 study?
This clinical trial studies the following conditions: Dyskeratosis Congenita, Telomere Biology Disorders.
Who is sponsoring clinical trial NCT04959188?
This trial is sponsored by National Cancer Institute (NCI), which has 3,257 total clinical trials registered on ClinicalTrials.gov.
Where is trial NCT04959188 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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