Clinical Care Consortium of Telomere-Associated Ailments (CCCTAA) Database

Clinical Care Consortium of Telomere-Associated Ailments (CCCTAA) Database

Sponsors

Lead Sponsor: National Cancer Institute (NCI)

Source National Institutes of Health Clinical Center (CC)
Brief Summary

Study Description: This protocol will be utilized for the creation and management of a repository of coded clinical data on patients with Telomere Biology Disorders (TBDs) submitted by researchers from CCCTAA member institutions. Objective: The primary objective of this study is to develop a shared database (repository) of coded clinical research data, managed by NCI, to facilitate collaborative research across CCCTAA member institutions.

Detailed Description

Study Description: This protocol will be utilized for the creation and management of a repository of coded clinical data on patients with Telomere Biology Disorders (TBDs) submitted by researchers from CCCTAA member institutions. Objective: The primary objective of this study is to develop a shared database (repository) of coded clinical research data, managed by NCI, to facilitate collaborative research across CCCTAA member institutions.

Overall Status Recruiting
Start Date 2022-07-12
Completion Date 2037-12-31
Primary Completion Date 2037-12-31
Study Type Observational
Primary Outcome
Measure Time Frame
Genotype-phenotype relationships ongoing
Prevalence of Telomere Biology Disorders (TBDs) ongoing
Phenotypic spectrum of TBDs ongoing
Enrollment 10000
Condition
Eligibility

Sampling Method:

Non-Probability Sample

Criteria:

- INCLUSION CRITERIA: In order to be eligible to participate in this study, an individual must meet all of the following criteria: - Diagnosed or being evaluated for a Telomere Biology Disorder (TBD) at a CCCTAA member institution. - Male or female, from 0 to 100 years. EXCLUSION CRITERIA: An individual who meets any of the following criteria will be excluded from participation in this study: -Individuals who do not meet eligibility criteria. No other exclusionary criteria apply.

Gender:

All

Minimum Age:

N/A

Maximum Age:

N/A

Healthy Volunteers:

No

Overall Official
Last Name Role Affiliation
Sharon A Savage, M.D. Principal Investigator National Cancer Institute (NCI)
Overall Contact

Last Name: Cecilia P Higgs

Phone: (240) 276-7627

Email: cecilia.higgs@nih.gov

Location
Facility: Status: Contact: NIH National Cancer Institute - Shady Grove Cecilia Higgs, M.H.S. 240-276-7627 cecilia.higgs@nih.gov
Location Countries

United States

Verification Date

2022-06-23

Responsible Party

Type: Sponsor

Keywords
Has Expanded Access No
Condition Browse
Arm Group

Label: Patients

Description: A cohort of participants who have or are suspected of having a telomere biology disorder

Study Design Info

Observational Model: Cohort

Time Perspective: Other

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