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 * * * * *