10-144-175 Me. Code R. § 2

Current through 2024-51, December 18, 2024

Section 144-175-2 - DATA COLLECTION AND REPORTING

A.Required reporters. A health care practitioner, hospital or other health care facility that screens for, diagnoses or provides therapeutic services to patients with ALS must complete the Amyotrophic Lateral Sclerosis Reporting Form prescribed by the Department for reporting all cases of amyotrophic lateral sclerosis.

B.Required data submission. Unless otherwise directed by the Department, health care practitioners, hospitals, and other health care facilities must submit data using the Amyotrophic Lateral Sclerosis Reporting Form prescribed by the Department no later than six months from the date of ALS diagnosis. The Amyotrophic Lateral Sclerosis Reporting Form is available on the Department's website and by request. The form must be completed and submitted in a secure manner to the Departmen't DRVS Office location via U.S. postal mail or facsimile. Required data for reportable cases include the following:

1. Date of birth;

2. Date of diagnosis;

3. Gender;

4. Race/ethnicity;

5. Occupational status and history;

6. Residential status and history; and

7. Reported known risk factors (including, but not limited to, familial gene mutation, health habits, veteran status, and exposure to heavy metals and environmental toxins, as required by the ALS reporting form).

Health care practitioners, hospitals, and other health care facilities subject to this rule must provide additional information and/or records concerning a reportable case at the request of the Department.

C.Annual report. The Department will enter data collected under this rule into the Registry, which serves as the designated statewide database for reported cases of ALS. Paper forms will be maintained for a minimum of three years. Registry data is stored electronically by the Department indefinitely unless directed otherwise. Annually, the Department will prepare and make public a report to the Governor of statewide ALS prevalence and incidence estimates of the disease, including available trend analysis, in accordance with 22 MRS §1414. The report will include de-identified data collected under this rule. DRVS will ensure that reports include unique cases only.

10-144 C.M.R. ch. 175, § 2