In short
Act 100-2019 creates the Registry of Persons with Epilepsy attached to the Health Department. What a patient needs to know fits in one sentence: reporting is compulsory for the doctor, but **only after obtaining the patient’s consent** under HIPAA. The law repeats that condition three times — in the doctor’s duty, in the insurer’s, and in the Registry’s power to request additional information — so the patient holds control. Reports are confidential and may be used only in epidemiological and statistical studies, scientific research and for educational purposes **as long as the patient’s identity is not disclosed**. Everyone with access to the information — employees, collaborators and researchers — must sign confidentiality agreements under which they are legally responsible for any breach, and **those agreements remain in force even after the relationship with the Registry has ended**. The penalties are deliberately asymmetric: up to five hundred dollars per violation of the law or its regulations, but **giving false information to the Registry carries a fixed three (3) year prison term**, or a fine up to ten thousand dollars if the convicted party is a legal person.
What is it?
It is a Health Department database holding all diagnosed epilepsy cases, which also identifies the types of epilepsy per patient. The law says what it is for: the Registry is the entity responsible for processing, analyzing and disseminating information on the incidence of people with epilepsy on the Island, and the statement of motives explains that without an accurate database the patient profile, the incidence hotspots and the factors contributing to the condition cannot be established. The Secretary of Health may — need not — enter collaborative agreements with the Sociedad Puertorriqueña de Epilepsia to set the terms under which it could be given authority to implement, operate and maintain the Registry’s operation alongside the Department; the law expressly clarifies that **establishing such an agreement shall not be mandatory for either party**.
Who can do it?
The law creates no enrollment procedure for the patient. The Registry is fed by two reporting duties: that of **every physician authorized to practice in Puerto Rico who diagnoses a new case or provides treatment for epilepsy**, and that of **every health insurance company, as to every insured diagnosed with epilepsy**. Both duties are quarterly and both are conditioned on first obtaining the patient’s consent under HIPAA. What the patient can do, then, is decide whether to consent.
Requirements
- For your case to enter the Registry your consent is required. The law expressly conditions the physician’s and the insurance company’s duty to report on first obtaining the patient’s consent under HIPAA.Verified against the official source
- To take part in the UPR Medical Sciences Campus research projects, studies or medical exams, the law asks two things: that the person authorize it and that they be referred by a physician.Verified against the official source
Documents you need
Cost
Step by step
Step 1: Compulsory for the doctor, conditioned on your consent
Article 3 writes it in a single sentence and both halves matter equally: **it shall be compulsory for every physician authorized to practice in Puerto Rico who diagnoses a new case or provides treatment for epilepsy to report it quarterly to the Health Department’s Registry of Persons with Epilepsy, after obtaining the patient’s consent**, under Public Law 104-191 of 1996, HIPAA. Article 4 repeats the same structure for the payer: every health insurance company must report quarterly to the Registry every insured diagnosed with epilepsy, after obtaining the patient’s consent under HIPAA. And Article 7 repeats it a third time for additional information: the Registry may request and obtain from physicians and health insurance companies any pertinent information related to following up on these cases **as long as the patient’s consent is obtained**.
Step 2: Confidentiality, and how long it lasts
Article 6 is the law’s most protective. The reports of notified cases **shall be confidential**, and it provides they **may be used in epidemiological and statistical studies, scientific research and for educational purposes, as long as the patient’s identity is not disclosed**. It then widens the circle of those responsible: **all persons with access to the information the Registry holds** — whether employees or collaborators who work in or contribute to its functioning and operation, and all researchers with access to that data — **must sign confidentiality agreements under which they shall be legally responsible for any breach of confidentiality**. And it closes with the part rarely written: **those agreements shall remain in force even after the employee, collaborator or researcher has ended their relationship with the Registry**.
Step 3: How it is sent and what it holds
Article 5 provides that reports shall be notified to the Registry **electronically, through reports designed by the Registry of Persons with Epilepsy**, containing the information necessary to study and follow up these cases. The law does not publish the content of those reports: it says who designs them, not what fields they carry, and we do not invent them. On the database side, Article 2 says the Registry **shall maintain a database of all cases diagnosed with this condition** and that **the types of epilepsy per patient shall be identified in the Registry**. And Article 8 sets upward accountability: the Registry shall submit quarterly reports to the Secretary of the Department of Health.
Step 4: The penalties, and the surprising one
Article 10 has two very different rungs. The first: **the Secretary of Health may impose a fine not exceeding five hundred dollars ($500.00) per violation on any person or institution violating this Act’s provisions or its regulations**. The second is of another order: **any person who gives false information to the Registry shall be punished with a fixed three (3) year prison term**; and if the convicted party is a legal person, **it shall be punished with a fine up to ten thousand dollars ($10,000)**. The law thus separates administrative non-compliance from falsehood, and attaches prison to falsehood.
Step 5: What the data is used for, and what may reach you
Article 12 is where the Registry becomes something a patient can use. The Secretary of Health **shall take affirmative steps relying on the data collected in the Registry to secure federal funds** facilitating treatment, education, studies and research or related purposes for epilepsy. And **the University of Puerto Rico Medical Sciences Campus is authorized** to carry out, in coordination and mutual agreement with the Health Department, **those research projects, studies or medical exams necessary for people who so authorize it and are referred by a physician**, enabling early and appropriate diagnosis, detection or treatment of the condition. Fiscal resources designated from any source for those purposes remain under the Health Department’s custody, control and oversight. Article 11 adds that the Secretary may accept donations for prevention, treatment, education, studies and research or related purposes.
Step 6: Who may operate the Registry
Articles 2 and 9 say the same thing from two sides. The Secretary of Health **may** enter collaborative agreements with the Sociedad Puertorriqueña de Epilepsia to set the terms under which it could be given authority to implement, operate and maintain the Registry’s operation together with the Department. And the law clarifies: **establishing that agreement shall not be mandatory for either party**. We reproduce that power as written; we do not describe the Sociedad Puertorriqueña de Epilepsia, a private entity and not a primary source for this guide. Article 9 also charges the Secretary with establishing the rules and regulations needed to implement the law’s purposes, and Article 13 gave ninety (90) days from approval to approve them.
Where to do it
There is no counter for the patient: the Registry of Persons with Epilepsy is attached to the Health Department and is fed by what physicians and health insurance companies report, always with the patient’s prior consent. The conversation that does exist is with your doctor, who must request that consent before reporting, and who can refer you to the UPR Medical Sciences Campus for the Article 12 research projects, studies or exams. What we do not publish: the consent form, the electronic report format — the law says the Registry designs it and does not publish its fields — the Registry’s address or phone, or the regulation the Secretary was to approve within ninety days. That is why cost and processing time stay unverified.
How long it takes
What to do if something goes wrong
If your doctor tells you they must report your diagnosis, the law says yes, but **after obtaining your consent**. That condition is written three times in the law: for the physician, for the insurance company and for the Registry’s additional information requests. If you worry about who will see the data, Article 6 makes the reports confidential, allows their use in studies and for educational purposes only without disclosing your identity, and requires employees, collaborators and researchers to sign confidentiality agreements for which they are legally responsible, agreements that remain in force after their relationship with the Registry ends. If someone reported false information, the law sets a fixed three-year prison term, or a fine up to $10,000 if it is a legal person. What we do not publish. We do not publish the Secretary’s regulation or the electronic report format: the law orders them and does not contain them. We publish no epilepsy requirements, coverage or treatments: this law creates a registry, not health coverage, and does not say what a health plan must cover. We do not describe the Sociedad Puertorriqueña de Epilepsia, which the law names as a possible Registry operator through an agreement that is not mandatory for either party. And a note on scope: if you are after medication coverage, a medication denied by your plan or patient rights in general, those are other topics with their own guides.
Common mistakes
- Believing the doctor may report your case without asking you: the law conditions the duty to report on first obtaining your HIPAA-compliant consent.
- Thinking only the doctor reports: the health insurance company must also report quarterly every insured diagnosed, and also with your consent.
- Assuming the data may be published with your name: the reports are confidential and may only be used in studies without disclosing the patient’s identity.
- Believing confidentiality ends when the employee or researcher leaves: the agreements remain in force after the relationship with the Registry ends.
- Confusing the fine with the penalty for falsehood: the administrative fine reaches $500 per violation, but giving false information carries a fixed three-year prison term.
- Expecting the Registry to give you treatment: the route to the Medical Sciences Campus studies and exams requires the person to authorize it and to be referred by a physician.
- Taking for granted that the Sociedad Puertorriqueña de Epilepsia operates the Registry: the law only authorizes a collaborative agreement and says it is not mandatory for either party.
Frequently asked questions
Must my doctor report that I have epilepsy?
Article 3 makes it compulsory for every physician authorized in Puerto Rico who diagnoses a new case or provides treatment for epilepsy to report it quarterly to the Registry, but **after obtaining the patient’s consent** under HIPAA. Both halves of the sentence count.
Who can see the Registry’s information?
The reports are confidential. They may be used in epidemiological and statistical studies, scientific research and for educational purposes as long as the patient’s identity is not disclosed. Everyone with access — employees, collaborators and researchers — must sign confidentiality agreements and is legally responsible for any breach; those agreements remain in force after their relationship with the Registry ends.
Does my health plan also report?
Yes. Article 4 requires every health insurance company to report quarterly to the Registry every insured diagnosed with epilepsy, after obtaining the patient’s consent under HIPAA.
What happens if someone reports false information?
Article 10 provides that any person who gives false information to the Registry shall be punished with a fixed three (3) year prison term, and that if the convicted party is a legal person it shall be fined up to ten thousand dollars ($10,000). Separately, the Secretary may impose a fine up to five hundred dollars ($500) per violation of the law or its regulations.
Does the Registry give me access to exams or studies?
Article 12 authorizes the UPR Medical Sciences Campus, in coordination and mutual agreement with the Health Department, to carry out research projects, studies or medical exams for people who so authorize it and **are referred by a physician**, enabling early and appropriate diagnosis, detection or treatment of epilepsy. The law publishes no additional requirements or procedure.
Official sources
These are the government pages this guide is based on.
- Departamento de Salud de Puerto Rico
Salud
bvirtualogp.pr.gov
- Puerto Rico Department of Health
Salud
www.salud.pr.gov
Last verified
August 23, 2026
MiPRFácil is an independent informational website and is not affiliated with, endorsed by, or operated by the Government of Puerto Rico or any government agency.
MiPRFácil does not submit applications on your behalf.
Was this guide helpful?
Did you find out-of-date information?
Immunization Registry: requesting your vaccine record and fixing an error
Act 169-2019 lets you inspect and request a copy of your vaccines and your minor children’s, and ask the provider who gave the vaccine to fix an error.
Your rights as a patient: what the Bill of Rights says
Act 194-2000 made plain: emergency access regardless of ability to pay, information before deciding, your medical record, and the right to appeal a denial.
Your plan denied your medication: the medical exception and its 48 hours
The Health Insurance Code gives the plan 48 hours to decide a medical exception, and guarantees your medication while it decides. 24 hours if controlled.
Puerto Rico Autism Registry: who registers and what it is for
It is not your paperwork: the law obliges the health professional to register. And the Registry can link you to services.
Medical cannabis: how to register and what the law actually allows
Act 42-2017’s patient registry: the medical recommendation, the Board ID, annual renewal, and the use rules that surprise many people.