Extended Survival Analysis of the Dallas Newborn Cohort

Study ID
STU 052011-092

Cancer Related
No

Healthy Volunteers
No

Study Sites

  • Clements University Hospital
  • Children's Medical Center-Dallas
  • Parkland Health & Hospital System

Contact
Leah Adix
214-456-2888
leah.adix@childrens.com

Principal Investigator
Timothy McCavit

Summary

The Dallas newborn Cohort is a large group of sickle cell patients which has been previously defined and used to make the most widely cited modern estimates of survival for children with sickle cell disease (SCD). We propose to use the national Death index, the DFWHC database, medical records from Children's Medical Center Dallas, Parkland and St. Paul university Hospital, to review existing records and extend a survival analysis of this patient group. This is important because our capcacity to follow up with this cohort after transition to adult care at age 18 has been limited and because of a recent study suggesting the young adult period is particularly high risk for this patient population.

Participant Eligibility

1. Membership in the Dallas Newborn Cohort (defined as (1) born in Texas on or after November 1, 1983; (2) Identified to have SCD by the newborn screening program of the Texas Department of Health; (3) evaluated at least once by the SCD program at Children's Medical Center Dallas; (4) Confirmed to have either SS, SC, S-beta zero thalassemia, or s-beta plus thalassemia by our center

2. Status in the DNC designated as
* inactive
* ,
* transitioned to adult care
* , or
* moved/transferred to another center
* in the clinical sickle cell database at Children[Right Quote]s Medical Center Dallas