1-1     By:  Goolsby (Senate Sponsor - Harris)                H.B. No. 1504
 1-2           (In the Senate - Received from the House May 6, 1999;
 1-3     May 7, 1999, read first time and referred to Committee on Health
 1-4     Services; May 13, 1999, reported adversely, with favorable
 1-5     Committee Substitute by the following vote:  Yeas 5, Nays 0;
 1-6     May 13, 1999, sent to printer.)
 1-7     COMMITTEE SUBSTITUTE FOR H.B. No. 1504                   By:  Madla
 1-8                            A BILL TO BE ENTITLED
 1-9                                   AN ACT
1-10     relating to the establishment of a consortium of Alzheimer's
1-11     disease centers.
1-12           BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF TEXAS:
1-13           SECTION 1.  Subtitle H, Title 3, Education Code, is amended
1-14     by adding Chapter 151 to read as follows:
1-15           CHAPTER 151.  CONSORTIUM OF ALZHEIMER'S DISEASE CENTERS
1-16           Sec. 151.001.  DEFINITION.  In this chapter, "council" means
1-17     the Texas Council on Alzheimer's Disease and Related Disorders.
1-18           Sec. 151.002.  CONSORTIUM; CLINICAL CENTERS.  (a)  The
1-19     council shall establish a consortium of Alzheimer's disease
1-20     centers, to be initially composed of the Alzheimer's disease
1-21     centers at the Baylor College of Medicine, the Texas Tech
1-22     University Health Sciences Center, the University of North Texas
1-23     Health Science Center at Fort Worth, and The University of Texas
1-24     Southwestern Medical Center at Dallas.  The council may add
1-25     additional consortium participants to the consortium as necessary.
1-26           (b)  The council shall provide funds to the consortium
1-27     participants to assist those participants to develop clinical
1-28     centers that meet the standards of the consortium.
1-29           (c)  A participant's clinical center may employ any personnel
1-30     necessary to support its activities, including clinical,
1-31     administrative, and data management personnel.
1-32           Sec. 151.003.  PROGRAMS.  (a)  The consortium shall
1-33     coordinate and direct its programs to provide to the extent
1-34     practicable centralized, uniform services among the consortium
1-35     participants.
1-36           (b)  The consortium shall:
1-37                 (1)  offer clinical services to all patients of the
1-38     consortium's clinical centers, notwithstanding the independent
1-39     status of each participant;
1-40                 (2)  establish a database for:
1-41                       (A)  making data available to each consortium
1-42     participant according to its specific activities;
1-43                       (B)  providing a resource index to facilitate
1-44     research projects; and
1-45                       (C)  providing data on patient health outcomes to
1-46     appropriate state agencies and to researchers in this state; and
1-47                 (3)  with the aid of the council and the National
1-48     Alzheimer's Association or its affiliate, develop and distribute to
1-49     patients, caregivers, and health care professionals educational
1-50     materials and services and inform patients of any research projects
1-51     and therapeutic trials open for their participation.
1-52           Sec. 151.004.  STEERING COMMITTEE.  To advise the council on
1-53     consortium activities, the council shall establish a steering
1-54     committee composed of one representative from each consortium
1-55     participant.
1-56           Sec. 151.005.  DATA COORDINATING CENTER.  (a)  The council
1-57     shall establish a data coordinating center to be located at the
1-58     Texas Tech University Health Sciences Center.  To the extent
1-59     practicable, the center shall be operated in association with the
1-60     data management operations of that institution's Alzheimer's
1-61     disease center.
1-62           (b)  The data coordinating center shall establish a database
1-63     and make data available to each consortium participant according to
1-64     the specific activities of the participant.
 2-1           (c)  The council shall appoint a physician or other person
 2-2     with a similar clinical background to administer the center.
 2-3           (d)  The person administering the center may employ any
 2-4     personnel necessary to support the center's activities, including a
 2-5     project coordinator.  The person may require the project
 2-6     coordinator to hold a master's or doctoral degree related to public
 2-7     health.
 2-8           (e)  The project coordinator shall coordinate the center's
 2-9     activities among the center, the consortium participants, the
2-10     council, and the public.
2-11           Sec. 151.006.  FUNDING.  (a)  The council may receive state
2-12     appropriated funds for the purpose of supporting the research
2-13     activities of the consortium under this chapter.
2-14           (b)  The council may solicit and accept gifts, grants, and
2-15     donations for purposes of this chapter.
2-16           Sec. 151.007.  ACCESS TO DATA.  (a)  The council may restrict
2-17     access to the data maintained by the consortium or data
2-18     coordinating center to consortium participants that contribute data
2-19     as requested by the council.
2-20           (b)  The steering committee periodically shall review and
2-21     evaluate the availability and sharing of data under this section.
2-22           Sec. 151.008.  PERFORMANCE REVIEW.  The council, with
2-23     recommendations from the steering committee, shall review and
2-24     evaluate the performance of the consortium participants and data
2-25     coordinating center at least every five years.
2-26           SECTION 2.  The importance of this legislation and the
2-27     crowded condition of the calendars in both houses create an
2-28     emergency and an imperative public necessity that the
2-29     constitutional rule requiring bills to be read on three several
2-30     days in each house be suspended, and this rule is hereby suspended,
2-31     and that this Act take effect and be in force from and after its
2-32     passage, and it is so enacted.
2-33                                  * * * * *