UT Health Science Center San Antonio

Texas Neural Tube Defect Project Archives



Descriptive Summary and Abstract

Creator Texas Department of State Health Services. Texas Birth Defect Epidemiology and Surveillance Branch.
Title: Texas Neural Tube Defect Project Archives
Inclusive dates: 1980 - 2003
Abstract: The Texas Neural Tube Defect Archives are a collection of historical documents regarding the study of neural tube defects (NTDs) in Texas during the Texas Neural Tube Defect Project (TNTDP). Gathered by the Texas Birth Defect Epidemiology and Surveillance Branch (BDES) of the Texas Department of State Health Services, the collection covers the 1991 Brownsville anencephaly cluster and the 8-year federally-funded project that both investigated risk factors for neural tube defects and provided counseling and folic acid supplements to mothers to help prevent recurrent NTD cases. (See Vol. 16, Issue 1, Texas Birth Defects Monitor, June 2000.)
Identification: AR 150
Extent: 26 boxes, 6 linear feet
Language: Materials are written in English and Spanish.
Repository University of Texas Health Science Center at San Antonio, UTHSC Libraries, University Archives, San Antonio, TX 78229-3900

Administrative History Note

In April 1991, three babies with anencephaly were born in a Brownsville, Texas, hospital within 36 hours. The babies died soon after birth. When these cases occurred in Cameron County, little was known about what causes NTDs like anencephaly. It was known that, in the United States, NTDs are most common among Hispanics and least common in African Americans. The birth defects are also more common in families with low incomes. Community members thought the birth defect problems could be related to pollution from pesticide use and assembly plant industries along the Mexico/U.S. border. Doctors in the Texas Department of Health (today’s Texas Department of State Health Services [DSHS]) asked epidemiologists from the Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia, to help them look into the problem.

In response to this cluster and the need for better data, and in recognition of the enormous resources routinely put forth by DSHS in the investigation of birth defect clusters, the Texas State Legislature passed the Texas Birth Defects Act in 1993. Out of this statute, the Texas Birth Defects Registry was created to actively identify children born with birth defects. At about the same time, the Texas Neural Tube Defects Project (TNTDP) was initiated by TDH and collaborators. This seven-year study, funded in large part by the CDC, focused on surveillance, research and recurrence prevention in Texas counties along the border with Mexico. Although the TNTDP wrapped up data collection in 2000, scientific research into the possible causes of NTDs continues to be published by the Texas Department of State Health Services.

The Texas Neural Tube Defects Archives chronicle this effort from the 1980s to 2003, and has now been donated to the Briscoe Library at the UT Health Science Center San Antonio. It is hoped that this will allow and encourage researchers to contribute to better understanding this unique public health event and the efforts that it stimulated.

Sources:

Texas Birth Defects Monitor, Vol. 16, Issue 1, June 2000.)

Texas Department of State Health Services website, Neural Tube Defects and the Texas-Mexico Border


Scope and Contents

The collection consists of 26 boxes in four parts. The first three parts of the collection represent the three phases of the border NTD effort. Each part is grouped around primary subjects that fall into the categories of Project and Program Description (proposals, protocols, grant applications); Finances (grants, funding requests, budgets); Results (reports, recommendations, data analysis); Data Gathering (surveys, tools and procedures, personnel, in-the-field activities); Press and Media; Promotional and Presentation Material (brochures, pamphlets, visual aids [“slide shows”]); and Meetings (conferences, town meetings, monthly organization meetings). Part Four consists of remaining material including photographs, newspaper articles, and personal correspondences, arranged chronologically.


 

Arrangement of Collection

The collection is organized in 26 boxes in 4 series as follows:
Series 1: Background and Investigation
Series 2: Neural Tube Defect Project
Series 3: Statewide Neural Tube Defect Recurrence Prevention Program and Texas Neural Tube Defect Project
Series 4: Newspapers, Personal Correspondences, Audio and Visual Records, Photographs

Restrictions

Access Restrictions

The collection is open for research use. Materials may be viewed in the reading room of the P. I. Nixon Medical Historical Library, located on the 5th floor of the Briscoe Library at the University of Texas Health Science Center at San Antonio. Access to photographs and letters from parents is restricted as protected health information.

Use Restrictions

Copyright is retained by the authors of items in these papers, or their descendants, as stipulated by United States copyright law. Those granted access to these materials may also make single copies in lieu of note taking.

Physical Access

Some materials are in audiovisual formats that may need to be converted to a digital format prior to use.


Index Terms

Organizations
Texas. Dept. of State Health Services. Birth Defects, Epidemiology, and Surveillance
Texas. Birth Defects, Epidemiology, and Surveillance
Centers for Disease Control and Prevention (U.S.)
Subjects
Anencephaly
Folic Acid
Spinal Dysraphism
Neural Tube Defects - etiology
Neural Tube Defects – prevention & control
Pesticides
Public Health – Texas
Brownsville (Tex.)
Cameron County (Tex.)
Laredo (Tex.)

Document Types

Correspondence
Photographs
News Clippings
Reports
Questionnaires

Administrative Information

Preferred Citation

[Identification of item], in the Texas Neural Defect Project Archives, AR 150, University Archives, UTHSC Libraries, The UT Health Science Center at San Antonio.

Provenance

The Texas Neural Tube Defect Project Archives were created by the Texas Birth Defect Epidemiology and Surveillance Branch of the Texas Department of State Health Services during the Texas Neural Tube Defect project. Materials were donated to the Briscoe Library at the UT Health Science Center San Antonio in July 2011.

Collection History

Received as a donation from the Texas Department of State Health Services in July 2011.

Processing Information

These records were organized and processed by staff at the Texas Department of State Health Services. Origial finding aid modified by Anne Comeaux in August 2011.


Detailed Description of Collection

 

Series I. Background and Investigation
6 boxes

Box Folder
AR 150*I.1 Pre-programs (Dr. J.D. Brender). 1 Anencephaly Data Summarized. Statewide. 1981-1986
63+ pages
2 Anencephaly Clustering Data. Paternal Occupation. 1990
37+ pages
3 Anencephaly. Race & Ethnicity. 1991
12 pages
4 Texas Air Control Board Border Environmental Plan. 20 Sep 1991
15 pages
5 Three Articles by Dr. J. D. Brender, TDH. 1989; 1990; 1993
18 pages
Box Folder
AR 150*I.2 Aflatoxin. 1 Aflatoxin Data. Statewide. 1986-1992
41 pages
2 Evaluation of Data. 1992-1993
12 pages
3 Surveys by Office of State Chemist. 1990-1923
47 pages
4 Contaminated Corn Incident. Brownsville. 1991
50 pages
5 Texas Agriculture Extension Service. Publication. n.d.
28 pages
Box Folder
AR 150*I.3 Reports and Summaries. 1 Groundwater Contamination Report. Texas. Apr 1991
Prepared by Texas Groundwater Protection Committee
15 pages
2 Request for Information by TDH. 1991
13 pages
(On air emissions, water quality, pesticide use)
3 Texas Air Control Board. 1991
8 pages
4 Texas Rural Legal Aid, Inc. Aug 1992
5 pages
(Correspondence re need to examine pesticide exposure as cause of neural tube defects)
5 NTD Report Clustering Investigation, Cameron Co. 1 Jul 1992
Texas Department of Health
135 pages
6 Supplemental Report to July 1, 1992 Report. 28 Aug 1992
National Center for Environmental Health
82 pages
7 EPA. Remarks to Border Environmental Assembly. Santa Fe, N.M. 25 Jun 1992
National Center for Environmental Health
4 pages
8 Mexico. Press Release. 24 Aug 1992
3 pages
(Anacephaly Fears in Juarez Unfounded)
9 One Border Foundation. Brownsville. 21 Oct 1993
4 pages
(UT Galveston study shows anacephaly associated with environment)
10 TDH. Report/Summary. Cameron & Hidalgo Cos. 23 Aug 1995
35 pages
Epidemiology of Neural Tube Defects in Two Texas Border Counties 1980-1992
11 Interagency. US/Mexico Border Environmental Health Project. 1993; 1995
17 pages
Box Folder
AR 150*I.4 Gathering Data. 1 TDH. Request Medical Records. Brownsville. 1991-1992
16 pages
2 "Initial Report…Scientific Advisory Committee…" ca. Jul 1992
11 pages
3 CDC Budget. 6 Jul 1992; 9 Feb 1993
4 pages
4 Texas A&M. Study Protocol. 6 Dec 1993
25 pages
5 UT-Houston. Pilot Program. Protocol & Application. Nov/Dec 1993
90 pages
Box Folder
AR 150*I.5 Gathering Data. 1 CDC Questionnaires. 15 Jul 1991; 9 Nov 1992
119 pages
2 CDC Recommendations for Folic Acid. 1992
39 pages
3 TDH. Folic Acid Recommendations. 9 Sep 1992
5 pages
4 TDH. Summary Report. 13 Jan 1993
8 pages
5 Folic Acid Media Campaign. 1993
41 pages
6 TDH Activities. 1993
8 pages
7 Trip Reports. David Montanez, CDC. May-Aug 1993; Aug 1994
8 pages
8 "A Study of TDH Cameron Cty Folic Acid Awareness Campaign" (Draft). 13 Sep 1994
12 pages
9 Case Record Instructions. ca. 1992
3 pages
10 Telephone Scripts. Awareness Study. ca. 1994
12 pages
Box Folder
AR 150*I.6 Press and Congress. 1 Media and Press. 1992
22 pages
2 Sens. P. Gramm & L. Bentsen. Cong. Solomon Ortiz. May-Oct 1992
12 pages



 

Series II: Neural Tube Defect Project
7 boxes

Box Folder
AR 150*II.1 Proposals and Protocols. 1 NTD Surveillance & Intervention Proposal. 21 Aug 1992
45 pages
2 Folic Acid Intervention Protocol. 1993
66 pages
3 Surveillance Protocol. 1993
106 pages
4 Cameron County NTD Investigation. 1993-1994
20 pages
5 Case Control Study Protocol. 1996
44 pages
Box Folder
AR 150*II.2 Grants and Funding. 1 CDC Grant. Ref.# U85/CCU608761-01. 1992
32 pages
2 CDC Grant. Ref.# U85/CCU608761-02/-03/-04. 1994-1996
28 pages
3 Application for Federal Assistance. 1993
51 pages
4 Staffing. Position Description & Budget. 29 Oct 1992
24 pages
5 Request for EPA Assistance. 2 Dec 1994
14 pages
6 Memorandum of Understanding. City of Laredo. Jan 1995
4 pages
7 Biomarkers. 1995; 1997
39 pages
8 Joint EPA Grant Proposal. 14 Sep 1995
9 pages
9 "Bridging the Gap" Grant Application. 1996-1997
5 pages
Neural Tube Defect Mentor Program
10 Confidentiality Agreement. UT-Houston & TDH. 13 Nov 1997
2 pages
11 Financial Status Reports. 1992-1997
43 pages
12 Supplemental Funding Requests. 1995-1997
20 pages
Box Folder
AR 150*II.3 Reports. 1 "Recent Trends...NTD...Texas" 3 parts: 1992,93,95. Date: Jan 1995
9 pages
2 NTD Quarterly Report 1993. Date: 27 Oct 1993.
6 pages
3 NTD Annual Report 1993. n.d.
21 pages
4 NTD Quarterly Report 1994. Date: 20 Jan 1994
13 pages
5 EPA Environmental Study. Date: 2 Jun 1994
9 pages
6 NTD Annual Report Jul 1994.
19 pages
7 NTD Quarterly Report Oct 1994. Date: 29 Nov 1994
12 pages
8 NTD Quarterly Report Jan 1995. Date: 7 Feb 1995
11 pages
9 NTD Quarterly Report April 1995. Date: 26 May 1995
10 pages
10 NTD Annual Report July 1995. Date: 7 Aug 1995
15 pages
11 NTD Highlights. Date: May 1995(?)
1 page
12 Epidemiology...NTD in 2 Texas Border Cos. 1980-92. Date: 23 Aug 1995
34 pages
13 NTD Quarterly Report July-Sep 1995.
13 pages
14 Environmental Analysis...Cameron & Hidalgo Cos… Date: Sep 1995
26 pagse
15 Epidemiology...NTD in 2...(duplicate 3.12). Date: 23 Aug 1995
34 pages
16 "Prevalence of Total Spin Bifida...Texas, 1995."
1 page
17 TNTDP Fact Sheet. Date: June 1996
1 page
18 NTD "Closing the Gap" Fact Sheet. Date: 1995/1996
10 pages
19 NTD Semi-annual Report Oct 1995-Mar 1996.
15 pages
20 NTD Semi-annual Report Apr 1996-Sep 1996. Date: 20 Nov 1996
16 pages
21 NTD Semi-annual Report Oct 1996-Mar 1997. Date: 20 Jun 1997
21 pages
22 NTD Final Report Jan 1993-Sep 1998. Date: 3 Feb 1999
31 pages
23 NTD Cluster Update to 1998. Date: 11 Mar 1999
16 pages
24 "Selected Facts for Cameron County, 1997". Date: 22 Jan 1999
2 pages
25 Supplemental Study, Aug 2000. Date: 14 Nov 2000
6 pages
26 Transition TNTDP to SNTDPP. Date: 2000
32 pages
27 Cluster Investigation Report NTD in El Paso County, TX. Date: Sep-Nov 1999
3 pages
28 "Texas NTDP Description for TDH Administrative Excellence Award" ca. 2000
20 pages
Box Folder
AR 150*II.4 Gathering Data. 1 Personnel Lists. n.d.
8 pages
2 Blank Questionnaires. 1944
49 pages
3 Blood Collection & ICD Codes. 1992
12 pages
4 Coding Instructions-Fetal Death. 1995
23 pages
5 Consent Forms. 1995; 1997; 1999
72 pages
6 Mother Questionnaire (English). ca. 1997
183 pages
7 Mother Questionnaire (Spanish). ca. 1997
183 pages
8 Mother Questionnaire UT-Houston. ca. 1997
52 pages
9 Filed Specimen Collection Protocol. ca. 1997/1998
50 pages
10 Case Control Protocol & Intervention Instructions. 1995
165 pages
11 NTD Surveillance & Intervention Project Operations Manuel Table of Contents. 9 June 1993
4 pages
Box Folder
AR 150*II.5 Meetings and Presentations. 1 Presentation. APHA. San Francisco. Judy Henry. 25 Oct 1993
49+ pages
2 Eagle Pass Town Meeting. 18,19 Jul 1995
2 pages
3 Border Symposium Presentation #2. 1996?
9 pages
4 Birth Defects Forum, Brownsville. 8,9 Apr 1997
61 pages
5 NTD Group Meetings & Conference Calls. Apr 1999-Aug 2000
9 pages
6 Overhead Transparencies (1). n.d.
45+ pages
7 Overhead Transparencies (2) Kate Hendricks. n.d.
36+ pages
Box Folder
AR 150*II.6 Press and Promotion. 1 Tex. Senate Bill no.89-Birth Defects Surveillance. Feb 1993
29 pages
2 Press Releases & Conferences. Jul 1992-Oct 1993
38 pages
3 Laura Bush, Honorary Spokesperson. March 1999
30 pages
4 Folic Acid Public Service Announcements. ca. 2000
8 pages
5 National Achievement Award (HMHB). Oct 1997
1 page
6 Promotional/Informational-Sheets. n.d.
60+ pages
7 Promotional/Informational-Broachers & Pamphlets. n.d.
23+ items
8 Newsletter & Bulletin Articles. 1992+
14 items
Box Folder
AR 150*II.7 Mexico. 1 MX/TX NTD Meeting. "Secretaria de Salud". 29-30 Sep 1993
200+ pages
2 International Conference on NTD. Harlingen, TX. 11-12 Oct 1993
40 pages
3 Mexico. NTD Stats. Various Mxn border locations. Sep 1999
7 pages
4 Mexico. Photo Album of "risk factors" of NTD. (Products & Drugs). n.d.
7 pages



 

Series III. Statewide Neural Tube Defect Recurrence Prevention Program and Texas Neural Tube Defect Project
7 boxes

Box Folder
AR 150*III.1 Period: Oct 1999-Sep 2000 1 Statewide NTD Recurrence Prevention Program (SNTDRPP). Work plan FY99. 4 Jun 1999.
5 pages
2 SNTDRPP. IRB. UT-San Antonio. 28 Oct 1999
35 pages
3 SNTDRPP. IRB ; TNTDP. Protocol. 11 Nov 1999; 20 May 1999
77 pages
4 Folic Acid Proposal. IRB. UT-Houston. Feb/Apr 2000
17 pages
5 SNTDRPP. Updates/adjustments. Mar/May 2000
22 pages
6 UT-San Antonio School of Nursing. Aug 2000
10 pages
7 Move funds from NTRPP to TNTDP. Oct 2000
5 pages
Box Folder
AR 150*III.2 Period: Oct 2000-Sep 2001. 1 SNTDRPP. IRB. 16 Nov 2000
32 pages
2 Budgets 21 Dec 2001
7 pages
3 Internal Review Track Sheet. UT-San Antonio. Aug 2000
10 pages
Box Folder
AR 150*III.3 Texas-Mexico Border States Birth Defect Project. 1 T-MBSBDP. March of Dimes. Jun/Jul 2000
9 pages
2 Certificate Incorporation. Texas-Mexico Border Health Ass. Oct 1999
11 pages
3 Pan American Health Organization (PAHO). 2000-2001
17 pages
4 T-MBSBDP. Laredo. 1998-2002
51 pages
5 T-MBSBDP. Brownsville. 2001
28 pages
Box Folder
AR 150*III.4 Presentation Materials. 1 Presentation. "For clinic staff". 1993
27 pages
2 Presentation. "Neural Tube Defects in Texas: A Closer Look at Hispanics". Sep 2002
34 pages
3 Presentation. SNTDRPP. 2003
40 pages
4 Presentation. PowerPoint, et. al. 2003
87 pages
5 Presentation. Hardboard. n.d.
24+ pages
6 Presentation. Statistics. 1999?
10 pages
7 Presentation. Transparencies. n.d.
70+ pages
Box Folder
AR 150*III.5 Data Gathering. 1 Survey & Questions. 1999/2000
25 pages
2 Subject Consent & Questionnaire. 1999; 2001
42 pages
3 Database Input Guidelines. Jun 2002
10 pages
4 Training Packet. Jun 2002(?)
44 pages
5 Questionnaire. Nov 2002(?)
21 pages
6 Community Worker Training (NTDRPP). 2000(?)
13 pages
7 Participant "Good-by letter". May 2003(?)
2 pages
Box Folder
AR 150*III.6 Reports/Evaluations/Statistics/Literature 1 News Releases (3). 2000
6 pages
2 "Aggressive Monitoring Catches Emerging Clusters". Laredo Case. Sep 2002
12 pages
3 Reports/Evaluations. Oct 1999-Jan 2003
10 reports
4 Statistics. Sep 2001-Jun 2003
40 pages
5 Promotional Literature. n.d.
8 items
6 Testimonials. n.d.
38+ pages and 6 photos
7 "Guidance for Industry: Fumonisin Levels in Human Foods & Animal Feeds". 7 Aug 2000; 22 May 2001
39 pages and 6 photos
8 "Maternal Pesticide Exposure & NTD in Mexican Americans". ca. 2000
24 pages
Box Folder
AR 150*III.7 Meetings. 1 Texas Birth Defects Monitoring Division. Austin. July 1999
6 pages
2 Binational Birth Defects Meeting. San Antonio. 1-2 Sep 1999
73+ pages
3 Laredo Meeting. 10 Dec 2002
32 pages
4 Monthly Meetings. Mar 1999-Jul 2003
80 pages



 

Series IV. Newspapers, Personal Correspondences, Audio and Visual Records, Photographs
6 boxes

Box Folder
AR 150*IV.1 Newspaper articles, 1992-2004. 1 Newspaper articles 1991-1992
20 pages
2 Newspapers 1993
43 pages
3 Newspapers 1994
57 pages
4 Newspapers 1995
25 pages
5 Newspapers 1996
26 pages
6 Newspapers 1997
28 pages
7 Newspapers 1998-1999
47 pages
8 Newspapers 2000
25 pages
9 Newspapers 2001-2004
17 pages
Box Folder
AR 150*IV.2 Personal Communications, 1992-1996. 1 Personal Communications 1992
91 pages
Access to 2 letters to/from parents is restricted as protected health information. Letters removed to Box IV.6.
2 Personal Communications 1993
86 pages
3 Personal Communications 1994
93 pages
4 Personal Communications 1995
46 pages
5 Personal Communications 1996
58 pages
Box Folder
AR 150*IV.3 Personal Communications, 1997. 1 Personal Communications 1997
310 pages
Access to 1 letter is restricted as protected health information. Letter removed to Box IV.6.
Box Folder
AR 150*IV.4 Personal Communications, 1998-2003. 1 Personal Communications 1998
154 pages
Access to 1 thank you letter is restricted as protected health information. Letter removed to Box IV.6.
2 Personal Communications 1999
88 pages
3 Personal Communications 2000
120 pages
Access to 1 letter is restricted as protected health information. Letter removed to Box IV.6.
4 Personal Communications 2001
90 pages
5 Personal Communications 2002-2003
17 pages
Access to 1 letter is restricted as protected health information. Letter removed to Box IV.6.
Box Folder
AR 150*IV.5 Interview tapes, presentation slides/PowerPoint, etc. 1 Interview tapes, presentation slides/PowerPoint, intervention video, training tapes n.d.
24 itmes
Access restricted. Contains protected health information.
Box Folder
AR 150*IV.6 Photographs & Letters. 1 NTD birth photos, Intervention participant photos. n.d.
8 sets
Access restricted. Contains protected health information.
2 Personal communications removed from boxes IV.2 – IV.4 1992-2002
7 items
Access restricted. Contains protected health information.