HB 1449

1	A bill to be entitled
2	An act relating to brain tumor research; creating s.
3	381.853, F.S.; providing legislative findings and intent;
4	requiring the Department of Health to develop and maintain
5	a brain tumor registry; providing that individuals may
6	choose not to be listed in the registry; establishing the
7	Florida Center for Brain Tumor Research within the Scripps
8	Research Institute; providing purpose and goal of the
9	center; requiring the center to hold an annual brain tumor
10	biomedical technology summit; providing for clinical
11	trials and collaboration between certain entities;
12	providing for funding; establishing a scientific advisory
13	council and providing for composition and terms thereof;
14	providing rulemaking authority to the department;
15	providing an appropriation; providing an effective date.
16
17	Be It Enacted by the Legislature of the State of Florida:
18
19	Section 1.  Section 381.853, Florida Statutes, is created
20	to read:
21	381.853  Florida Center for Brain Tumor Research.--
22	(1)  The Legislature finds that each year an estimated
23	190,000 citizens of the United States are diagnosed with
24	cancerous and noncancerous brain tumors and that biomedical
25	research is the key to finding cures for these tumors. The
26	Legislature further finds that, although brain tumor research is
27	being conducted throughout the state, there is a lack of
28	coordinated efforts among researchers and health care providers.
29	Therefore, the Legislature finds that there is a significant
30	need for a coordinated effort to achieve the goal of curing
31	brain tumors. The Legislature further finds that the biomedical
32	technology sector meets the criteria of a high-impact sector,
33	pursuant to s. 288.108(6), having a high importance to the
34	state's economy with a significant potential for growth and
35	contribution to our universities and quality of life.
36	(2)  It is the intent of the Legislature to establish a
37	coordinated effort among the state's public and private
38	universities and hospitals and the biomedical industry to
39	discover brain tumor cures and develop brain tumor treatment
40	modalities. Moreover, it is the intent of the Legislature to
41	expand the state's economy by attracting biomedical researchers
42	and research companies to the state.
43	(3)  The Department of Health shall develop and maintain a
44	brain tumor registry that is an automated, electronic, and
45	centralized database of individuals with brain tumors. The
46	individual, or the parent or guardian of the individual if the
47	individual is a minor, may refuse to participate in the brain
48	tumor registry by signing a form obtained from the department or
49	from the health care practitioner or entity that provides brain
50	tumor care or treatment, which indicates that the individual
51	does not wish to be included in the registry. The decision to
52	not participate in the registry must be noted in the registry.
53	(4)  There is established within the Scripps Research
54	Institute the Florida Center for Brain Tumor Research.
55	(a)  The purpose of the center is to provide a central
56	repository for brain tumor biopsies from individuals throughout
57	the state, improve and monitor brain tumor biomedical research
58	programs within the state, facilitate funding opportunities, and
59	foster improved technology transfer of brain tumor research
60	findings into clinical trials and widespread public use.
61	(b)  The goal of the center is to find cures for brain
62	tumors.
63	(c)  The center shall hold an annual brain tumor biomedical
64	technology summit in the state to which physicians and
65	biomedical researchers from the state's public and private
66	universities and teaching hospitals are invited to share
67	biomedical research findings in order to expedite the discovery
68	of cures. Summit attendees shall cover the costs of such
69	attendance or obtain sponsorship for such attendance.
70	(d)  The center shall encourage clinical trials in the
71	state on research that holds the promise of curing brain tumors.
72	The center shall facilitate partnerships between researchers,
73	treating physicians, and hospitals for the purpose of sharing
74	new techniques and new research findings, as well as
75	coordinating the voluntary donation of brain tumor biopsies.
76	(e)  The center shall facilitate the formation of
77	partnerships between researchers, physicians, and hospitals in
78	the state.
79	(f)  The center shall be funded through private, state, and
80	federal sources.
81	(5)  There is established within the center a scientific
82	advisory council that includes biomedical researchers,
83	physicians, and representatives from public and private
84	universities and hospitals. The council shall meet at least
85	annually.
86	(a)  The council shall consist of representatives from:
87	1.  The Scripps Research Institute.
88	2.  A teaching hospital, as defined in s. 408.07.
89	3.  Public and private state universities.
90	4.  The Department of Health.
91	5.  The Florida Medical Association.
92	(b)  Council members shall serve staggered 4-year terms.
93	(c)  Members of the council shall serve without
94	compensation, and each organization represented shall cover all
95	expenses of its representative.
96	(6)  The Department of Health may adopt, repeal, and amend
97	rules pursuant to ss. 120.536(1) and 120.54 relating to the
98	center and the administration of the brain tumor registry. Such
99	rules may include procedures for participating in brain tumor
100	research and for providing access to confidential information
101	necessary for brain tumor investigations. For the purposes of
102	the brain tumor registry, the rules may include procedures for a
103	health care practitioner and researcher to obtain authorization
104	to use the brain tumor registry and methods for an individual or
105	guardian to elect not to participate in the brain tumor
106	registry.
107	Section 2.  The sum of $4 million is appropriated from the
108	General Revenue Fund to the Florida Center for Brain Tumor
109	Research for the 2006-2007 fiscal year for the purpose of
110	funding brain tumor research and funding for the procurement of
111	brain tumor biopsies.
112	Section 3.  This act shall take effect July 1, 2006.

CODING: Words stricken are deletions; words underlined are additions.