Benefits of Having an MS Registry Enforced By a Law

Background: On July 22, 2016 Law 85 was approved by the Government of Puerto Rico (PR).  This law states that every physician authorized to practice medicine in PR has to register all their patients, with the patient’s consent, to the PRMS Registry (Article 2, Law 85). This pioneering law demands neurological clinics, hospitals, and physicians to provide demographic and clinical information. Therefore, this law facilitates the progress of clinical studies in hopes of better understanding the manifestations of MS in Hispanics. 

Objectives: Law 85 could act as a model to other countries for the implementation of similar laws that enforce long term registries.

Methods: The PRMS Registry collects data from all diagnosed Puerto Rican MS patients living on the island. A self-report questionnaire consisting of clinical and demographic information is collected from each patient. An informed consent is obtained before obtaining any information. 

Results: The data collected by the self-report questionnaires provided by the PRMS Registry allows us to monitor the manifestation of MS in PR. It will also allow us to analyze the disease epidemiological disparities compared to other ethnic groups in other parts or the world. 

Conclusions: Law 85 is the first law reported that enforces an MS registry. The development of more laws, like Law 85, will promote more efficient epidemiological/clinical surveillance of MS in other countries. This will foster more clinical and demographical research that will allow the medical and scientific community to better characterize MS patients. The information gathered from these studies may not only affect the medical field but may also influence the government’s approach to MS patient care, since it could shed light on disability and working status trends.