HF 2556

Introduction - 94th Legislature (2025 - 2026)

Posted on 04/10/2025 04:24 p.m.

A bill for an act
relating to health; establishing an endometriosis data and biorepository program
administered by the University of Minnesota; requiring a report; appropriating
money; amending Minnesota Statutes 2024, section 13.3806, by adding a
subdivision; proposing coding for new law in Minnesota Statutes, chapter 137.

BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF MINNESOTA:

Section 1.

Minnesota Statutes 2024, section 13.3806, is amended by adding a subdivision
to read:

new text begin Subd. 23. new text end

new text begin Endometriosis data and biorepository program. new text end

new text begin Data on individuals in the
endometriosis data and biorepository program administered by the University of Minnesota
is classified under section 137.48, subdivision 3.
new text end

Sec. 2.

new text begin [137.48] ENDOMETRIOSIS DATA AND BIOREPOSITORY PROGRAM.
new text end

new text begin Subdivision 1. new text end

new text begin Definitions. new text end

new text begin For purposes of this section, the following terms have the
meanings given:
new text end

new text begin (1) "biorepository" means a facility that, for laboratory research, collects, catalogs, and
stores samples of biological material from humans, including but not limited to urine, blood,
tissue, cells, DNA (deoxyribonucleic acid), RNA (ribonucleic acid), and protein, that is
coded without individual identifiers and linked with phenotypic data; and
new text end

new text begin (2) "phenotypic data" means clinical information about a person that is coded without
individual identifiers and that includes disease history, symptoms, and demographic data
including but not limited to age, sex, race, and ethnicity.
new text end

new text begin Subd. 2. new text end

new text begin Program established. new text end

new text begin (a) The Board of Regents of the University of Minnesota
is requested to establish an endometriosis data and biorepository program in the state to
enable and promote research regarding:
new text end

new text begin (1) early detection of endometriosis in adolescents and adults; and
new text end

new text begin (2) the development of therapeutic strategies to improve clinical management of
endometriosis.
new text end

new text begin (b) The program may be established and operated in collaboration with other entities
engaged in endometriosis research.
new text end

new text begin Subd. 3. new text end

new text begin Program duties; data classified. new text end

new text begin (a) The endometriosis data and biorepository
program shall:
new text end

new text begin (1) design a comprehensive longitudinal sample and clinical data collection protocol to
characterize endometriosis and cellular functions of individuals with endometriosis;
new text end

new text begin (2) collect from patients with endometriosis and control patients without endometriosis
and code:
new text end

new text begin (i) endometrial tissue specimens;
new text end

new text begin (ii) fluids, including but not limited to blood and urine; and
new text end

new text begin (iii) clinical and demographic data and questionnaires regarding symptoms of
endometriosis and quality of life;
new text end

new text begin (3) develop standard operating procedures concerning samples of biological material,
including but not limited to transportation, coding, processing, long-term retention, and
storage of samples;
new text end

new text begin (4) establish data transmission and onboarding operations necessary for institutions in
the state to participate in banking with and accessing data from the data and biorepository
program;
new text end

new text begin (5) curate biological samples of endometriosis from a diverse cross-section of
communities in the state to ensure representation of all groups affected by endometriosis,
including representation of the state's underrepresented communities, as defined in section
148E.010, subdivision 20;
new text end

new text begin (6) raise awareness of endometriosis in underrepresented populations and promote
research of improved diagnostic and therapeutic treatment options by communicating with
health care providers and persons impacted by endometriosis information on the latest
therapeutic treatment options for endometriosis;
new text end

new text begin (7) create opportunities for collaborative research among institutions in the state focused
on the pathogenesis, pathophysiology, progression, prognosis, and prevention of
endometriosis and the discovery of noninvasive diagnostic biomarkers, novel targeted
therapeutics, and improved medical and surgical interventions;
new text end

new text begin (8) serve as a centralized resource for endometriosis information and a conduit to promote
education and raise public awareness regarding endometriosis;
new text end

new text begin (9) facilitate collaboration among researchers and health care providers, educators,
students, patients, and other individuals impacted by endometriosis through conferences
and continuing medical education programs regarding best practices for the diagnosis, care,
and treatment of endometriosis;
new text end

new text begin (10) collect information on the impact of endometriosis on residents of the state, including
but not limited to the impact of endometriosis on health and comorbidity, health care costs,
and overall quality of life; and
new text end

new text begin (11) apply for and accept grants, gifts, and bequests of money for the purpose of
performing the program's functions pursuant to this subdivision.
new text end

new text begin (b) Data on individuals, as defined by section 13.02, subdivision 5, collected, created,
or maintained by the endometriosis data and biorepository program is classified as private
data on individuals, as defined by section 13.02, subdivision 12.
new text end

new text begin Subd. 4. new text end

new text begin Report required. new text end

new text begin Beginning January 15, 2026, and each even-numbered year
thereafter, the Board of Regents of the University of Minnesota must report to the chairs
and ranking minority members of the legislative committees with primary jurisdiction over
health policy and finance on the work accomplished regarding the implementation,
accomplishments, and future goals of the endometriosis data and biorepository program
established by this section.
new text end

Sec. 3. new text begin APPROPRIATIONS; ENDOMETRIOSIS DATA AND BIOREPOSITORY
PROGRAM.
new text end

new text begin $....... in fiscal year 2026 and $....... in fiscal year 2027 are appropriated from the general
fund to the Board of Regents of the University of Minnesota for the endometriosis data and
biorepository program under section 2.
new text end