| 1 | The Health & Families Council recommends the following: |
| 2 |
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| 3 | Council/Committee Substitute |
| 4 | Remove the entire bill and insert: |
| 5 | A bill to be entitled |
| 6 | An act relating to brain tumor research; creating s. |
| 7 | 381.853, F.S.; providing legislative findings and intent; |
| 8 | requiring the Evelyn F. and William L. McKnight Brain |
| 9 | Institute of the University of Florida to develop and |
| 10 | maintain a brain tumor registry; providing that |
| 11 | individuals may choose not to be listed in the registry; |
| 12 | establishing the Florida Center for Brain Tumor Research |
| 13 | within the Evelyn F. and William L. McKnight Brain |
| 14 | Institute of the University of Florida; providing purpose |
| 15 | and goal of the center; providing for a competitive grant |
| 16 | process for awarding certain funds; requiring the center |
| 17 | to hold an annual brain tumor biomedical technology |
| 18 | summit; providing for clinical trials and collaboration |
| 19 | between certain entities; requiring the center to submit |
| 20 | an annual report to the Governor, Legislature, and |
| 21 | Secretary of Health; providing for funding; establishing a |
| 22 | scientific advisory council and providing for membership, |
| 23 | terms of office, meetings, and compensation; providing an |
| 24 | appropriation; providing an effective date. |
| 25 |
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| 26 | Be It Enacted by the Legislature of the State of Florida: |
| 27 |
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| 28 | Section 1. Section 381.853, Florida Statutes, is created |
| 29 | to read: |
| 30 | 381.853 Florida Center for Brain Tumor Research.-- |
| 31 | (1) The Legislature finds that each year an estimated |
| 32 | 190,000 citizens of the United States are diagnosed with |
| 33 | cancerous and noncancerous brain tumors and that biomedical |
| 34 | research is the key to finding cures for these tumors. The |
| 35 | Legislature further finds that, although brain tumor research is |
| 36 | being conducted throughout the state, there is a lack of |
| 37 | coordinated efforts among researchers and health care providers. |
| 38 | Therefore, the Legislature finds that there is a significant |
| 39 | need for a coordinated effort to achieve the goal of curing |
| 40 | brain tumors. The Legislature further finds that the biomedical |
| 41 | technology sector meets the criteria of a high-impact sector, |
| 42 | pursuant to s. 288.108(6), having a high importance to the |
| 43 | state's economy with a significant potential for growth and |
| 44 | contribution to our universities and quality of life. |
| 45 | (2) It is the intent of the Legislature to establish a |
| 46 | coordinated effort among the state's public and private |
| 47 | universities and hospitals and the biomedical industry to |
| 48 | discover brain tumor cures and develop brain tumor treatment |
| 49 | modalities. Moreover, it is the intent of the Legislature to |
| 50 | expand the state's economy by attracting biomedical researchers |
| 51 | and research companies to the state. |
| 52 | (3) The Evelyn F. and William L. McKnight Brain Institute |
| 53 | of the University of Florida shall work with other institutions |
| 54 | and organizations to develop and maintain a brain tumor registry |
| 55 | that is an automated, electronic, and centralized database of |
| 56 | individuals with brain tumors. The individual, or the parent or |
| 57 | guardian of the individual if the individual is a minor, may |
| 58 | refuse to participate in the brain tumor registry by signing a |
| 59 | form obtained from the department or from the health care |
| 60 | practitioner or entity that provides brain tumor care or |
| 61 | treatment which indicates that the individual does not wish to |
| 62 | be included in the registry. The decision to not participate in |
| 63 | the registry must be noted in the registry. |
| 64 | (4) The Florida Center for Brain Tumor Research is |
| 65 | established within the Evelyn F. and William L. McKnight Brain |
| 66 | Institute of the University of Florida. |
| 67 | (a) The purpose of the center is to foster collaboration |
| 68 | with brain cancer research organizations and other institutions, |
| 69 | provide a central repository for brain tumor biopsies from |
| 70 | individuals throughout the state, improve and monitor brain |
| 71 | tumor biomedical research programs within the state, facilitate |
| 72 | funding opportunities, and foster improved technology transfer |
| 73 | of brain tumor research findings into clinical trials and |
| 74 | widespread public use. |
| 75 | (b) The goal of the center is to find cures for brain |
| 76 | tumors. |
| 77 | (c) Funds specifically appropriated by the Legislature for |
| 78 | peer-reviewed brain tumor research shall be awarded using a |
| 79 | competitive grant process developed by the center. |
| 80 | (d) The center shall hold an annual brain tumor biomedical |
| 81 | technology summit in the state to which scientists conducting |
| 82 | basic peer-reviewed scientific research from the state's public |
| 83 | and private universities, teaching hospitals, and for-profit and |
| 84 | nonprofit institutions are invited to share biomedical research |
| 85 | findings in order to expedite the discovery of cures. Summit |
| 86 | attendees shall cover the costs of such attendance or obtain |
| 87 | sponsorship for such attendance. |
| 88 | (e) The center shall encourage clinical trials in the |
| 89 | state on research that holds the promise of curing brain tumors. |
| 90 | The center shall facilitate the formation of partnerships |
| 91 | between researchers, physicians, clinicians, and hospitals for |
| 92 | the purpose of sharing new techniques and new research findings |
| 93 | and coordinating the voluntary donation of brain tumor biopsies. |
| 94 | (f) The center shall submit an annual report to the |
| 95 | Governor, the President of the Senate, the Speaker of the House |
| 96 | of Representatives, and the Secretary of Health no later than |
| 97 | January 15 that contains recommendations for legislative changes |
| 98 | necessary to foster a positive climate for the pursuit of brain |
| 99 | tumor research and the development of treatment modalities in |
| 100 | the state. |
| 101 | (g) The center shall be funded through private, state, and |
| 102 | federal sources. |
| 103 | (5) There is established within the center a scientific |
| 104 | advisory council that includes biomedical researchers, |
| 105 | physicians, clinicians, and representatives from public and |
| 106 | private universities and hospitals. The council shall meet at |
| 107 | least annually. |
| 108 | (a) The council shall consist of: |
| 109 | 1. Two members from the Florida Center for Brain Tumor |
| 110 | Research within the Evelyn F. and William L. McKnight Brain |
| 111 | Institute of the University of Florida appointed by the |
| 112 | Governor. |
| 113 | 2. Two members from the Scripps Research Institute, one of |
| 114 | whom must have expertise in basic brain tumor research, |
| 115 | appointed by the Speaker of the House of Representatives. |
| 116 | 3. Two members from other public and private universities |
| 117 | and institutions directly involved in brain tumor research |
| 118 | appointed by the President of the Senate. |
| 119 | 4. Two physicians directly involved in the treatment of |
| 120 | brain tumor patients appointed by the Secretary of Health. |
| 121 | (b) Council members shall serve staggered 4-year terms. |
| 122 | (c) Council members shall serve without compensation, and |
| 123 | each organization represented shall cover all expenses of its |
| 124 | representative. |
| 125 | Section 2. The sum of $500,000 is appropriated from the |
| 126 | General Revenue Fund to the Evelyn F. and William L. McKnight |
| 127 | Brain Institute of the University of Florida for the 2006-2007 |
| 128 | fiscal year. The level of funding for brain tumor research and |
| 129 | the procurement of brain tumor biopsies shall be commensurate |
| 130 | with the level of funding provided. |
| 131 | Section 3. This act shall take effect July 1, 2006. |