Curative Versus Disease-Modifying Therapies in Children With Severe Sickle Cell Disease
NCT01369160 · Status: COMPLETED · Type: OBSERVATIONAL · Enrollment: 33
Last updated 2014-05-28
Summary
The research proposed is a pilot study of pediatric and adolescent/young adult patients who have received the curative intervention (MSD-SCT), disease-modifying interventions (HU or CT) or SCC (control), with respect to three clinically important outcomes: quality-of-life (QOL), neurocognitive function, and reproductive potential. Comparable cohorts will be identified for each of the groups, drawing from patients treated by the SCD program of Children's Healthcare of Atlanta (CHOA). QOL measures and neuropsychiatric testing and will be administered. Reproductive endocrine function markers (laboratory studies and pubertal staging), will be collected and analyzed. A tracking system of such patients will also be developed, gathering available retrospective data and setting up a mechanism for collection of new data.
Conditions
Interventions
- BEHAVIORAL
-
Quality of Life measures
measuring QOL with different therapies
Sponsors & Collaborators
-
Emory University
lead OTHER
Principal Investigators
-
Ann Haight, MD · Children's Healthcare of Atlanta
Eligibility
- Min Age
- 3 Years
- Max Age
- 23 Years
- Sex
- ALL
- Healthy Volunteers
- No
Timeline & Regulatory
- Start
- 2005-05-31
- Primary Completion
- 2007-05-31
- Completion
- 2014-03-31
Countries
- United States
Study Locations
More Related Trials
-
Adolescent, Caregiver, and Young Adult Perspectives of the Transition From Pediatric to Adult Care for Sickle Cell Disease: A Preliminary Evaluation of the Sickle Cell Disease Transition Program
NCT01569971 ·Status: COMPLETED
-
School Readiness Intervention for Preschool Children With Sickle Cell Disease
NCT06367192 ·Status: RECRUITING ·Phase: NA
-
Quality of Life of Children With Sickle Cell Disease Who Are Getting Chronic Transfusions With a Lifeport
NCT00246077 ·Status: COMPLETED
-
Improving Self-Management in Adolescents With Sickle Cell Disease
NCT02851615 ·Status: COMPLETED ·Phase: NA
-
Long Term Effects of Hydroxyurea Therapy in Children With Sickle Cell Disease
NCT00305175 ·Status: COMPLETED
-
Integrative Training Program for Pediatric Sickle Cell Pain
NCT06691867 ·Status: RECRUITING ·Phase: NA
-
Predictors and Outcomes in Patients With Sickle Cell Disease
NCT03431935 ·Status: COMPLETED
-
iPeer2Peer Program for Youth With Sickle Cell Disease
NCT03989986 ·Status: ACTIVE_NOT_RECRUITING ·Phase: NA
-
Sickle Cell Disease and the Genomic and Gene Therapy Needs of Stakeholders
NCT04416178 ·Status: RECRUITING
-
Study of the Effect of Etavopivat on Cerebral Hemodynamic Response in Children With Sickle Cell Disease
NCT05725902 ·Status: COMPLETED ·Phase: PHASE2
-
Families Taking Control (FTC): Family-based Problem-solving Intervention for Children With Sickle Cell Disease
NCT02273310 ·Status: COMPLETED ·Phase: NA
-
Hydroxyurea to Prevent Brain Injury in Sickle Cell Disease
NCT01389024 ·Status: COMPLETED ·Phase: PHASE2
-
Building Adaptive Coping and Knowledge to Improve Daily Life
NCT04602728 ·Status: COMPLETED ·Phase: NA
-
Patient Centered Comprehensive Medication Adherence Management System in Patients With Sickle Cell Disease
NCT02371720 ·Status: COMPLETED ·Phase: NA
-
A Socio-ecological Approach for Improving Self-management in Adolescents With SCD
NCT06290401 ·Status: RECRUITING ·Phase: NA
-
Systematic Psychological and Medical Care for Children With SCD
NCT02022891 ·Status: COMPLETED
-
CHOICES3: Sickle Cell Disease Parenting CHOICES
NCT05292781 ·Status: ACTIVE_NOT_RECRUITING ·Phase: NA
-
Cooperative Assessment of Late Effects for SCD Curative Therapies
NCT05153967 ·Status: RECRUITING
-
Patient-Provider Tools to Improve the Transition to Adult Care in Sickle Cell Disease
NCT02200510 ·Status: COMPLETED ·Phase: NA
-
HLA Haploidentical Bone Marrow Transplant in Patients With Severe Sickle Cell Disease
NCT03240731 ·Status: COMPLETED ·Phase: PHASE2
-
Efficacy of a Decision Aid for Hydroxyurea in Sickle Cell Disease
NCT03577691 ·Status: TERMINATED ·Phase: NA
-
Telemedicine for Children With Sickle Cell Disease
NCT05087303 ·Status: ACTIVE_NOT_RECRUITING ·Phase: NA
-
Community Health Workers and mHealth for Sickle Cell Disease Care
NCT03648710 ·Status: COMPLETED ·Phase: NA
-
Hydroxyurea in Young Children With Sickle Cell Anemia
NCT00519701 ·Status: COMPLETED ·Phase: NA
-
Sickle Cell Disease: A Retrospective Chart Review
NCT01441375 ·Status: COMPLETED