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