By Goolsby H.B. No. 1504 76R3152 KEL-D 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, and The University of Texas 1-15 Southwestern Medical Center at Dallas. The council may add 1-16 additional consortium participants to the consortium as necessary. 1-17 (b) The council shall provide funds to the consortium 1-18 participants to assist those participants to develop clinical 1-19 centers that meet the standards of the consortium. 1-20 (c) A participant's clinical center may employ any personnel 1-21 necessary to support its activities, including clinical, 1-22 administrative, and data management personnel. 1-23 Sec. 151.003. PROGRAMS. (a) The consortium shall 1-24 coordinate and direct its programs to provide to the extent 2-1 practicable centralized, uniform services among the consortium 2-2 participants. 2-3 (b) The consortium shall: 2-4 (1) offer clinical services to all patients of the 2-5 consortium's clinical centers, notwithstanding the independent 2-6 status of each participant; 2-7 (2) establish a database for: 2-8 (A) making data available to each consortium 2-9 participant according to its specific activities; 2-10 (B) providing a resource index to facilitate 2-11 research projects; and 2-12 (C) providing data on patient health outcomes to 2-13 appropriate state agencies and to researchers in this state; and 2-14 (3) with the aid of the council and the National 2-15 Alzheimer's Association or its affiliate, develop and distribute to 2-16 patients, caregivers, and health care professionals educational 2-17 materials and services and inform patients of any research projects 2-18 and therapeutic trials open for their participation. 2-19 Sec. 151.004. STEERING COMMITTEE. To advise the council on 2-20 consortium activities, the council shall establish a steering 2-21 committee composed of one representative from each consortium 2-22 participant. 2-23 Sec. 151.005. DATA COORDINATING CENTER. (a) The council 2-24 shall establish a data coordinating center to be located at a 2-25 participating institution. To the extent practicable, the center 2-26 shall be operated in association with the data management 2-27 operations of that institution's Alzheimer's disease center. 3-1 (b) The data coordinating center shall establish a database 3-2 and make data available to each consortium participant according to 3-3 the specific activities of the participant. 3-4 (c) The council shall appoint a physician or other person 3-5 with a similar clinical background to administer the center. 3-6 (d) The person administering the center may employ any 3-7 personnel necessary to support the center's activities, including a 3-8 project coordinator. The person may require the project 3-9 coordinator to hold a master's or doctoral degree related to public 3-10 health. 3-11 (e) The project coordinator shall coordinate the center's 3-12 activities among the center, the consortium participants, the 3-13 council, and the public. 3-14 Sec. 151.006. FUNDING. (a) The council may receive state 3-15 appropriated funds for the purpose of establishing and maintaining 3-16 the consortium and data coordinating center under this chapter. 3-17 (b) The council may solicit and accept gifts, grants, and 3-18 donations for purposes of this chapter. 3-19 Sec. 151.007. ACCESS TO DATA. (a) The council may restrict 3-20 access to the data maintained by the consortium or data 3-21 coordinating center to consortium participants that contribute data 3-22 as requested by the council. 3-23 (b) The steering committee periodically shall review and 3-24 evaluate the availability and sharing of data under this section. 3-25 Sec. 151.008. PERFORMANCE REVIEW. The council, with 3-26 recommendations from the steering committee, shall review and 3-27 evaluate the performance of the consortium participants and data 4-1 coordinating center at least every five years. 4-2 SECTION 2. The importance of this legislation and the 4-3 crowded condition of the calendars in both houses create an 4-4 emergency and an imperative public necessity that the 4-5 constitutional rule requiring bills to be read on three several 4-6 days in each house be suspended, and this rule is hereby suspended, 4-7 and that this Act take effect and be in force from and after its 4-8 passage, and it is so enacted.