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

Status: Enrolling

Conditions: Telomere Biology Disorders; Inherited Bone Marrow Failure Syndrome; Dyskeratosis Congenita

Study type: Observational

Funder types: NIH

Identifiers

NCT05436431

000822-C

10000822

Details and patient eligibility

About

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.

Full 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.

Enrollment: 10,000 estimated patients

Sex: All

Volunteers: No Healthy Volunteers

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.