| 55 | | - | An Act concerning amyotrophic lateral sclerosis and supplementing Title 26 of the Revised Statutes. Be It Enacted by the Senate and General Assembly of the State of New Jersey: 1"Amyotrophic lateral sclerosis" means a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.1 1["Health care facility" means a health care facility licensed by the Department of Health pursuant to P.L.1971, c.136 (C.26:2H-1 et seq.)]1 1"Health care professional" means a person licensed to practice a health care profession pursuant to Title 45 of the Revised Statutes.1 b. 1(1)1 Consistent with federal and State privacy laws, the Department of Health shall require health care 1[facilities] professionals, who screen for, diagnose, or provide therapeutic services to patients with amyotrophic lateral sclerosis,1 to confidentially report to the department all known 1[and suspected]1 cases of amyotrophic lateral sclerosis in a manner to be specified by the department. 1(2) Any information reported to the department pursuant to this subsection shall be reported in a manner to protect against the disclosure of any confidential or personal identifying information of any patient or health care professional. (3) The Commissioner of Health may enter into data sharing and protection agreements with researchers or State, regional, or national amyotrophic lateral sclerosis registries for bidirectional data exchange for research purposes, provided that access to data under the agreements is consistent with the privacy, security, and disclosure protections under this act. In the case of researchers, the commissioner shall first obtain evidence of the approval of the researcher's academic committee for the protection of human subjects established in accordance with the provisions of 45 C.F.R. Part 46. The commissioner shall disclose the minimum amount of information necessary to accomplish a specified research purpose.1 c. The department shall record and compile information received pursuant to this section for research 1and statistical1 purposes only. 1d. Nothing in this act shall be construed to authorize the disclosure of any confidential or personal identifying information. e. No later than 12 months following the effective date of this act, the Commissioner of Health shall develop and make available on its Internet website written, educational materials that provide information about the National Amyotrophic Lateral Sclerosis Registry, including: (1) information on how to participate in the National Amyotrophic Lateral Sclerosis Registry and resources for assistance with the registration process; (2) information regarding the eligibility requirements for participation in the National Amyotrophic Lateral Sclerosis Registry; and (3) contact information for the National Amyotrophic Lateral Sclerosis Registry and for local and national research entities investigating the causes of amyotrophic lateral sclerosis.1 12. The Department of Health, in consultation with the Public Health Council, shall adopt rules and regulations, pursuant to the "Administrative Procedure Act," P.L.1968, c.410 (C.52:14B-1 et seq.), as are necessary to effectuate the purposes of this act.1 1[2.] 3.1 This act shall take effect immediately. |
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| 47 | + | An Act concerning amyotrophic lateral sclerosis and supplementing Title 26 of the Revised Statutes. Be It Enacted by the Senate and General Assembly of the State of New Jersey: 1. a. As used in this section: "Health care facility" means a health care facility licensed by the Department of Health pursuant to P.L.1971, c.136 (C.26:2H-1 et seq.) b. Consistent with federal and State privacy laws, the Department of Health shall require health care facilities to confidentially report to the department all known and suspected cases of amyotrophic lateral sclerosis in a manner to be specified by the department. c. The department shall record and compile information received pursuant to this section for research purposes only. 2. This act shall take effect immediately. STATEMENT This bill requires health care facilities to reports cases of amyotrophic lateral sclerosis. The bill provides that consistent with federal and State privacy laws, the Department of Health (department) is to require health care facilities to confidentially report to the department all known and suspected cases of amyotrophic lateral sclerosis in a manner to be specified by the department. The department is to record and compile information received pursuant to the bill's provisions for research purposes only. |
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| 71 | | - | b. 1(1)1 Consistent with federal and State privacy laws, the Department of Health shall require health care 1[facilities] professionals, who screen for, diagnose, or provide therapeutic services to patients with amyotrophic lateral sclerosis,1 to confidentially report to the department all known 1[and suspected]1 cases of amyotrophic lateral sclerosis in a manner to be specified by the department. |
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| 72 | | - | |
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| 73 | | - | 1(2) Any information reported to the department pursuant to this subsection shall be reported in a manner to protect against the disclosure of any confidential or personal identifying information of any patient or health care professional. |
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| 74 | | - | |
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| 75 | | - | (3) The Commissioner of Health may enter into data sharing and protection agreements with researchers or State, regional, or national amyotrophic lateral sclerosis registries for bidirectional data exchange for research purposes, provided that access to data under the agreements is consistent with the privacy, security, and disclosure protections under this act. In the case of researchers, the commissioner shall first obtain evidence of the approval of the researcher's academic committee for the protection of human subjects established in accordance with the provisions of 45 C.F.R. Part 46. The commissioner shall disclose the minimum amount of information necessary to accomplish a specified research purpose.1 |
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| 76 | | - | |
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| 77 | | - | c. The department shall record and compile information received pursuant to this section for research 1and statistical1 purposes only. |
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| 78 | | - | |
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| 79 | | - | 1d. Nothing in this act shall be construed to authorize the disclosure of any confidential or personal identifying information. |
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| 80 | | - | |
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| 81 | | - | e. No later than 12 months following the effective date of this act, the Commissioner of Health shall develop and make available on its Internet website written, educational materials that provide information about the National Amyotrophic Lateral Sclerosis Registry, including: |
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| 82 | | - | |
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| 83 | | - | (1) information on how to participate in the National Amyotrophic Lateral Sclerosis Registry and resources for assistance with the registration process; |
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| 84 | | - | |
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| 85 | | - | (2) information regarding the eligibility requirements for participation in the National Amyotrophic Lateral Sclerosis Registry; and |
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| 86 | | - | |
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| 87 | | - | (3) contact information for the National Amyotrophic Lateral Sclerosis Registry and for local and national research entities investigating the causes of amyotrophic lateral sclerosis.1 |
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| 63 | + | c. The department shall record and compile information received pursuant to this section for research purposes only. |
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