Read the full stored bill text
H. B. No. 999 *HR31/R1059* ~ OFFICIAL ~ G1/2
26/HR31/R1059
PAGE 1 (RF\JAB)
To: Public Health and Human
Services
MISSISSIPPI LEGISLATURE REGULAR SESSION 2026
By: Representatives Boyd (37th), Aguirre,
Burch, Calvert, Creekmore IV, Currie,
Felsher, Ford (73rd), Hawkins, Johnson,
Ladner, Mansell, McLean, Smith, Steverson,
Varner
HOUSE BILL NO. 999
AN ACT TO ESTABLISH THE MISSISSIPPI PARKINSON'S DISEASE 1
RESEARCH REGISTRY WITHIN THE STATE DEPARTMENT OF HEALTH UNDER THE 2
DIRECTION OF THE STATE HEALTH OFFICER; TO PROVIDE THAT THE STATE 3
HEALTH OFFICER SHALL ESTABLISH AND APPOINT THE MEMBERS OF THE 4
MISSISSIPPI PARKINSON'S DISEASE RESEARCH REGISTRY ADVISORY 5
COMMITTEE TO ASSIST IN THE DEVELOPMENT AND IMPLEMENTATION OF THE 6
REGISTRY, DETERMINE WHAT DATA WILL BE COLLECTED, AND ADVISE THE 7
DEPARTMENT; TO DIRECT THE STATE BOARD OF HEALTH TO PROMULGATE 8
RULES, IN CONSULTATION WITH THE ADVISORY COMMITTEE, TO DESIGNATE 9
PARKINSON'S DISEASE AND IDENTIFIED PARKINSONISMS AS DISEASES THAT 10
ARE REQUIRED TO BE REPORTED TO THE DEPARTMENT; TO REQUIRE THE 11
DEPARTMENT TO RECEIVE AND COLLECT DATA FOR THE REGISTRY ON THE 12
INCIDENCE AND PREVALENCE OF PARKINSON'S DISEASE AND PARKINSONISMS 13
IN MISSISSIPPI AND RELATED EPIDEMIOLOGICAL DATA; TO REQUIRE, 14
BEGINNING JANUARY 1, 2027, EACH MOVEMENT DISORDER CENTER THAT 15
TREATS A PATIENT WITH PARKINSON'S DISEASE AND EACH MOVEMENT 16
DISORDER HEALTH CARE PROVIDER WHO TREATS OR DIAGNOSES PARKINSON'S 17
DISEASE OR PARKINSONISMS FOR A PATIENT TO SUBMIT A PARKINSON'S 18
DISEASE REPORT TO THE DEPARTMENT; TO PROVIDE THAT A PATIENT WHO 19
DOES NOT WISH TO PARTICIPATE IN THE COLLECTION OF DATA FOR THE 20
PURPOSES OF RESEARCH IN THE REGISTRY MAY OPT OUT AFTER AN 21
OPPORTUNITY TO REVIEW THE DOCUMENTS AND ASK QUESTIONS; TO 22
AUTHORIZE THE DEPARTMENT TO MAKE DATA FROM THE REGISTRY, WITH OR 23
WITHOUT IDENTIFIERS, AVAILABLE TO RESEARCHERS THAT HAVE THE 24
APPROVAL OF AN INSTITUTIONAL REVIEW BOARD IN ACCORDANCE WITH 25
REQUIREMENTS OF FEDERAL REGULATIONS; TO PROVIDE THAT ALL 26
INFORMATION COLLECTED PURSUANT TO THIS ACT IS CONFIDENTIAL; TO 27
REQUIRE THE DEPARTMENT TO MAINTAIN AN ACCURATE RECORD OF ALL 28
PERSONS WHO ARE GIVEN ACCESS TO INFORMATION COLLECTED BY THE 29
DEPARTMENT PURSUANT TO THIS ACT; TO REQUIRE THE DEPARTMENT TO 30
PROVIDE NOTICE OF THE MANDATORY REPORTING REQUIRED UNDER THIS ACT 31
ON ITS WEBSITE AND TO PROFESSIONAL ASSOCIATIONS REPRESENTING 32
MOVEMENT DISORDER CENTERS AND MOVEMENT DISORDER HEALTH CARE 33
PROVIDERS; TO REQUIRE THE DEPARTMENT TO SUBMIT TO THE CHAIRMEN OF 34
H. B. No. 999 *HR31/R1059* ~ OFFICIAL ~
26/HR31/R1059
PAGE 2 (RF\JAB)
THE HOUSE AND SENATE PUBLIC HEALTH COMMITTEES A YEARLY PROGRAM 35
SUMMARY UPDATE; TO REQUIRE THE DEPARTMENT, BY OCTOBER 1, 2028, TO 36
CREATE, AND UPDATE ANNUALLY THEREAFTER, THE MISSISSIPPI 37
PARKINSON'S DISEASE RESEARCH REGISTRY WEBSITE WHERE THE PUBLIC CAN 38
FIND INFORMATION RELATED TO PARKINSON'S DISEASE AND THE REGISTRY, 39
THE YEARLY PROGRAM SUMMARY UPDATE, AND ANY OTHER INFORMATION 40
DEEMED RELEVANT BY THE ADVISORY COMMITTEE; AND FOR RELATED 41
PURPOSES. 42
BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF MISSISSIPPI: 43
SECTION 1. (1) As used in this section, the following terms 44
shall be defined as provided in this section: 45
(a) "Advisory committee" means the Mississippi 46
Parkinson's Disease Research Registry Advisory Committee 47
established under subsection (3) of this section. 48
(b) "Department" means the State Department of Health. 49
(c) "Movement disorder center" means a licensed health 50
care facility that operates outpatient clinics or ambulatory care 51
facilities that employ movement disorder health care providers. 52
(d) "Movement disorder health care provider" means a 53
physician or osteopath licensed in Mississippi who is fellowship 54
trained in movement disorders as specified by either the American 55
Academy of Neurology's Movement Disorders Section or the Movement 56
Disorder Society's Pan American Section. 57
(e) "Parkinson's disease" means a chronic and 58
progressive neurologic disorder resulting from a deficiency of the 59
neurotransmitter dopamine as a consequence of specific 60
degenerative changes in the area of the brain called the basal 61
ganglia characterized by tremor at rest, slow movements, muscle 62
rigidity, stooped posture, and unsteady or shuffling gait. 63
H. B. No. 999 *HR31/R1059* ~ OFFICIAL ~
26/HR31/R1059
PAGE 3 (RF\JAB)
(f) "Parkinsonisms": 64
(i) Means Parkinson's disease-related conditions 65
that cause a combination of movement abnormalities such as tremor 66
at rest, slow movement, muscle rigidity, impaired speech, and 67
muscle stiffness, which often overlap with and can evolve from 68
what appears to be Parkinson's disease; and 69
(ii) Includes multiple system atrophy, dementia 70
with Lewy bodies, corticobasal degeneration, and progressive 71
supranuclear palsy. 72
(g) "Registry" means the Mississippi Parkinson's 73
Disease Research Registry established in subsection (2) of this 74
section. 75
(h) "State Health Officer" means the executive director 76
of the department. 77
(2) The Mississippi Parkinson's Disease Research Registry is 78
established within the department under the direction of the State 79
Health Officer, who may enter into contracts, grants, or other 80
agreements as necessary to administer the registry in accordance 81
with this section. 82
(3) (a) The State Health Officer shall establish the 83
Mississippi Parkinson's Disease Research Registry Advisory 84
Committee to assist in the development and implementation of the 85
registry, determine what data will be collected, and advise the 86
department. 87
H. B. No. 999 *HR31/R1059* ~ OFFICIAL ~
26/HR31/R1059
PAGE 4 (RF\JAB)
(b) The advisory committee shall be appointed by the 88
State Health Officer and include at least one (1): 89
(i) Neurologist; 90
(ii) Movement disorder specialist; 91
(iii) Primary care provider; 92
(iv) Physician informaticist; 93
(v) Patient living with Parkinson's disease; 94
(vi) Public health professional; 95
(vii) Population health researcher familiar with 96
health data registries; 97
(viii) Parkinson's disease researcher; and 98
(ix) Representative from the University of 99
Mississippi School of Medicine with specific expertise in 100
Parkinson's disease. 101
The State Health Officer may appoint additional members to 102
the advisory committee as he or she deems necessary. 103
(4) The State Board of Health shall promulgate 104
administrative rules, in consultation with the advisory committee, 105
to: 106
(a) Designate Parkinson's disease and identified 107
Parkinsonisms as diseases that are required to be reported to the 108
department; 109
(b) Establish a system of collection and dissemination 110
of information on the incidence and prevalence of Parkinson's 111
H. B. No. 999 *HR31/R1059* ~ OFFICIAL ~
26/HR31/R1059
PAGE 5 (RF\JAB)
disease and Parkinsonisms in Mississippi and related 112
epidemiological data; 113
(c) Identify specific data points to be collected based 114
on the following four (4) core categories of data: 115
(i) Patient demographics; 116
(ii) Geography; 117
(iii) Diagnosis; and 118
(iv) Sufficient information to allow for 119
deduplication of patient records in the registry; 120
(d) Periodically review and revise data points to be 121
collected to ensure data and data collection procedures adapt to 122
new knowledge and technology; 123
(e) Establish a coding system that removes a patient's 124
name, address, social security number, fingerprints, photograph, 125
and any other information by which the identity of a patient can 126
be determined with reasonable accuracy; and 127
(f) Develop guidelines and procedures for reviewing and 128
approving requests to use registry data for valid scientific 129
research. 130
(5) The department shall: 131
(a) Receive and collect data for the registry on the 132
incidence and prevalence of Parkinson's disease and Parkinsonisms 133
in Mississippi and related epidemiological data, and may enter 134
into data-sharing contracts with data-reporting entities and their 135
associated medical record system vendors to securely and 136
H. B. No. 999 *HR31/R1059* ~ OFFICIAL ~
26/HR31/R1059
PAGE 6 (RF\JAB)
confidentially receive information related to Parkinson's disease 137
testing, diagnosis, and treatment; and 138
(b) Be responsible for any costs incurred in 139
administering the registry and implementing this section. 140
(6) (a) Beginning January 1, 2027, each movement disorder 141
center that treats a patient with Parkinson's disease and each 142
movement disorder health care provider who treats or diagnoses 143
Parkinson's disease or Parkinsonisms for a patient not otherwise 144
reported shall submit a Parkinson's disease report to the 145
department in a format required or approved by the department. 146
(b) (i) Movement disorder centers and movement 147
disorder health care providers shall provide each patient 148
diagnosed with Parkinson's disease or Parkinsonisms with a notice 149
regarding the reporting and collection of information and patient 150
data on Parkinson's disease. 151
(ii) A patient who does not wish to participate in 152
the collection of data for the purposes of research in the 153
registry may affirmatively opt out in writing after an opportunity 154
to review the documents and ask questions. 155
(iii) If a patient has chosen not to participate 156
and has opted out under subparagraph (ii) of this paragraph, the 157
movement disorder center and the movement disorder health care 158
provider shall only report that a Parkinson's disease case exists 159
and no further data shall be reported to the department for the 160
purposes of the registry. 161
H. B. No. 999 *HR31/R1059* ~ OFFICIAL ~
26/HR31/R1059
PAGE 7 (RF\JAB)
(iv) If a patient has been diagnosed with 162
Parkinson's disease or Parkinsonsisms in error, the movement 163
disorder center and the movement disorder health care provider 164
shall notify the department and the department shall remove the 165
patient from the registry. 166
(c) To ensure compliance with the reporting and 167
notification requirements of this subsection (6), the State Health 168
Officer or his or her agent may, upon reasonable notice, inspect a 169
representative sample of the medical records of patients admitted, 170
diagnosed, or treated for Parkinson's disease or Parkinsonisms at 171
a movement disorder center. 172
(d) A movement disorder center or movement disorder 173
health care provider who in good faith submits a report in 174
accordance with paragraph (a) of this subsection is not liable in 175
any cause of action arising from the submission of the report. 176
(e) A movement disorder center or movement disorder 177
health care provider may use automated reporting methods supplied 178
by the department or the IntelliTrue Health Information Exchange 179
to meet the requirements of this subsection. 180
(7) The department shall make data from the registry, with 181
or without identifiers, available to researchers that have the 182
approval of an institutional review board in accordance with 183
requirements of the Federal Policy for the Protection of Human 184
Subjects, 45 CFR Part 46, and, as applicable, 21 CFR Part 56, 45 185
H. B. No. 999 *HR31/R1059* ~ OFFICIAL ~
26/HR31/R1059
PAGE 8 (RF\JAB)
CFR Part 164, and any other relevant federal or state 186
requirements. 187
(8) (a) The department may enter into agreements to furnish 188
data collected in the registry to other states' Parkinson's 189
disease registries, federal Parkinson's disease control agencies, 190
local health officers, or health researchers not described in 191
subsection (7) of this section for the study of Parkinson's 192
disease. 193
(b) Before confidential information is disclosed 194
pursuant to paragraph (a) of this subsection, the out-of-state 195
registry, agency, officer, or researcher shall agree in writing to 196
maintain the confidentiality of the information. A researcher 197
shall also: 198
(i) Obtain approval of the researcher's respective 199
committee for the protection of human subjects under 45 CFR Part 200
46; and 201
(ii) Provide documentation to the department that 202
demonstrates to the department's satisfaction that the researcher 203
has established the procedures and ability to maintain the 204
confidentiality of the information. 205
(9) (a) Except as specifically provided in this section, 206
all information collected pursuant to this section is 207
confidential. 208
(b) Notwithstanding any other provision of law, a 209
disclosure authorized by this section shall include only the 210
H. B. No. 999 *HR31/R1059* ~ OFFICIAL ~
26/HR31/R1059
PAGE 9 (RF\JAB)
information necessary for the stated purpose of the requested 211
disclosure, used for the approved purpose, and not be further 212
disclosed. 213
(c) Provided that the security of confidentiality has 214
been documented, the furnishing of confidential information to the 215
department or its authorized representative in accordance with 216
this section shall not expose any person, agency, or entity 217
furnishing information to liability, and shall not be considered a 218
waiver of any privilege or a violation of a confidential 219
relationship. 220
(d) The department shall maintain an accurate record of 221
all persons who are given access to information collected by the 222
department pursuant to this section, which shall include: 223
(i) The name of the person authorizing access; 224
(ii) Name, title, address, and organizational 225
affiliation of persons given access; 226
(iii) Dates of access; and 227
(iv) The specific purpose for which accessed 228
information is to be used. 229
The record of access shall be open to public inspection 230
during normal operating hours of the department. 231
(e) Notwithstanding any other provision of law, 232
information collected by the department pursuant to this section 233
shall not be: 234
H. B. No. 999 *HR31/R1059* ~ OFFICIAL ~
26/HR31/R1059
PAGE 10 (RF\JAB)
(i) Available for subpoena or disclosed, 235
discoverable, or compelled to be produced in any civil, criminal, 236
administrative, or other proceeding; or 237
(ii) Deemed admissible as evidence in any civil, 238
criminal, administrative, or other proceeding for any reason. 239
(10) This section does not: 240
(a) Prohibit the publication by the department of 241
reports and statistical compilations that do not in any way 242
identify individual patients, cases, or sources of information; 243
(b) Restrict in any way a patient's access to his or 244
her own information; or 245
(c) Prohibit movement disorder center or movement 246
disorder health care providers from maintaining their own 247
facility-based Parkinson's disease registries. 248
(11) (a) Nothing in this section shall be deemed to compel 249
any individual to submit to any medical examination or supervision 250
by the department, any of its authorized representatives, or an 251
approved researcher. 252
(b) A person who seeks information or obtains registry 253
data pursuant to this section shall not contact a patient on the 254
registry or the patient's family unless the department has first 255
obtained permission for the contact from the patient or the 256
patient's family. 257
(12) The department shall provide notice of the mandatory 258
reporting of Parkinson's disease and Parkinsonisms required under 259
H. B. No. 999 *HR31/R1059* ~ OFFICIAL ~
26/HR31/R1059
PAGE 11 (RF\JAB)
this section on its website and to professional associations 260
representing movement disorder centers and movement disorder 261
health care providers. 262
(13) (a) By October 1, 2028, and October 1 of each year 263
thereafter, the department shall submit to the Chairmen of the 264
House Public Health and Human Services Committee and the Senate 265
Public Health and Welfare Committee a yearly program summary 266
update that includes: 267
(i) The incidence and prevalence of Parkinson's 268
disease and Parkinsonisms in the state by county; 269
(ii) The number of records that have been reported 270
to the department and included in the registry; and 271
(iii) Demographic information, including, but not 272
limited to, patients' age, gender, and race. 273
(b) In consultation with the advisory committee, the 274
department may include recommendations on necessary changes to the 275
registry in the yearly program summary update. 276
(c) The department shall publish the yearly program 277
summary update in a downloadable format on the website created 278
under subsection (14) of this section. 279
(14) By October 1, 2028, the department shall create, and 280
update annually thereafter, the Mississippi Parkinson's Disease 281
Research Registry website where the public can find information 282
related to Parkinson's disease and the registry, the yearly 283
H. B. No. 999 *HR31/R1059* ~ OFFICIAL ~
26/HR31/R1059
PAGE 12 (RF\JAB)
ST: Parkinson's Disease Research Registry;
establish within State Department of Health.
program summary update, and any other information deemed relevant 284
by the advisory committee. 285
SECTION 2. This act shall take effect and be in force from 286
and after July 1, 2026. 287