The Dallas Hereditary Spherocytosis Cohort Study
| Status: | Recruiting |
|---|---|
| Conditions: | Other Indications |
| Therapuetic Areas: | Other |
| Healthy: | No |
| Age Range: | Any |
| Updated: | 2/4/2013 |
| Start Date: | May 2010 |
| End Date: | December 2020 |
| Contact: | Shelley E Crary, MD, MSCS |
| Email: | shelley.crary@utsouthwestern.edu |
| Phone: | 214-456-2382 |
The purpose of this study is to
1. better characterize the short term and long term natural history of hereditary
spherocytosis (HS) including diagnosis, complications, and indications for and response
to splenectomy
2. evaluate and describe the health-related quality of life in children with HS.
Patients with a new or established diagnosis of HS seen at Children's Medical Center will be
asked to enroll in the study. Previous and current medical records will be reviewed to
systematically catalogue their history of HS, including diagnosis, complications,
hospitalizations, medications and laboratory data. Health-related quality of life
questionnaires will be given to the patients and their parents at enrollment and
periodically during the follow-up. Those who agree will have up to three small samples of
blood collected and frozen for future laboratory studies of complications associated with HS
and/or splenectomy.
We anticipate enrolling approximately 200 children and young adults with HS in this study
and following them until adulthood (age 18-21 years).
Inclusion Criteria:
- Diagnosis of HS with or without prior splenectomy
- Age 0 - 21 years
- Spanish-speaking subjects are eligible to participate
Exclusion Criteria:
- Unable to provide contact information for follow-up
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