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REGISTERS OF INHERITED METABOLIC DISEASES

Award Information

Agency:
Department of Health and Human Services
Branch:
N/A
Award ID:
11189
Program Year/Program:
1990 / SBIR
Agency Tracking Number:
11189
Solicitation Year:
N/A
Solicitation Topic Code:
N/A
Solicitation Number:
N/A
Small Business Information
Mize Information Enterprise
Box 670847 Dallas, TX 75229
View profile »
Woman-Owned: Yes
Minority-Owned: No
HUBZone-Owned: No
 
Phase 2
Fiscal Year: 1990
Title: REGISTERS OF INHERITED METABOLIC DISEASES
Agency: HHS
Contract: N/A
Award Amount: $500,000.00
 

Abstract:

THE OBJECTIVES OF THIS PROJECT ARE TO ESTABLISH A REGISTER OF INHERITED METABOLIC DISEASES (IMD'S) THAT WILL PROVIDE DATA FOR APPROPRIATE HEALTH-CARE PROVIDERS TO IDENTIFY, CLASSIFY, AND TRACK PATIENTS WITH IMD'S. THE METHODOLOGY DEVELOPED TO IMPLEMENT AS ACCURATE AND COMPLETE REGISTER INFORMATION AS POSSIBLE ON TWO IMD'S (GALACTOSEMIA AND MSUD)WILL BE TRANSFERRABLE TO OTHER DISEASES. TASKS INCLUDE: (1) ENSURE SECURITY OF DATA AND CONFIDENTIALITY OF PATIENT IDENTITY, (2) IDENTIFY INFORMATION SOURCES FROM WHICH DIAGNOSES HAVE BEEN ASCERTAINED OR POTENTIALLY IDENTIFIED, (3) DEVELOP SURVEY INSTRUMENTS TO DETERMINE METHODOLOGY OF CURRENT DATA COLLECTION, (4) DEFINE DATA SETS, AND (5) DEVELOP FORMS FOR COLLECTING REGISTER INFORMATION. DATABASE MANAGEMENT INCLUDES COMBINING EXISTENT METABOLIC CLINICSH DATA, NEWBORNSCREENING DATABASES, AND YET TO BE DETERMINED DATA SOURCES TO CREATE AS LARGE A REGISTER AS POSSIBLE. POTENTIAL USES OF THE REGISTER INCLUDE DIAGNOSTIC AND RESEARCH STUDIES OF: (1) TREATMENT OR CLASSIFICATION, (2) MORBIDITY AND MORTALITY, (3) INCIDENCE AND PREVALENCE, AND (4) RISKS FOR OFFSPRING. DIRECTORIES WILL BE CREATED TO COUPLE IDENTIFICATION OF INDIVIDUAL PHYSICIANS AND/OR GROUPSINVOLVED IN PATIENT CARE AND RESEARCH WITH LABORATORIES PERFORMING DIAGNOSTIC TESTS. THE REGISTER WILL ALLOW CLINICAL PERSONNEL TO ACCESS TIMELY INFORMATION LINKING HEALTH-CARE PROVIDERS AND IMD PATIENTS.

Principal Investigator:


0

Business Contact:

Small Business Information at Submission:

Mize Information Enterprise
Box 670847 Dallas, TX 75229

EIN/Tax ID:
DUNS: N/A
Number of Employees: N/A
Woman-Owned: No
Minority-Owned: No
HUBZone-Owned: No