Alabama Birth Defect Registry Privacy Laws: What Perinatal Ultrasound Centers Need to Know

Birth Defect Reporting Requirements

Alabama’s Birth Defect Reporting Mandates require each healthcare facility, healthcare provider, or physician who makes the diagnosis—including perinatal ultrasound centers performing prenatal imaging—to report designated birth defects diagnosed prenatally, at delivery, or up to 12 months of age. Reports are due within 30 days of the diagnosis or associated laboratory test. ([alabamapublichealth.gov](https://www.alabamapublichealth.gov/newbornscreening/required-reporting.html))

These Perinatal Diagnostic Reporting duties sit within Alabama’s notifiable disease framework. The State Health Officer Reporting Authority may require additional information to ensure accuracy and completeness, and reporting must follow the methods and time frames designated by rule. ([admincode.legislature.state.al.us](https://admincode.legislature.state.al.us/api/rule/420-4-1-.04))

List of Reportable Birth Defects

Per Alabama’s Medical Record Confidentiality Regulations and notifiable disease rules, you must report the following birth defects when diagnosed by your center:

• Anencephalus
• Anotia/microtia
• Atrioventricular septal defect
• Cleft lip and/or palate
• Common truncus arteriosus
• Gastroschisis
• Hypoplastic left heart syndrome
• Limb deficiencies
• Spina bifida
• Tetralogy of Fallot
• Total anomalous pulmonary venous connection
• Transposition of great arteries
• Trisomy 21 (Down syndrome)

These conditions are designated by ADPH and referenced in state rules governing notifiable conditions. ([alabamapublichealth.gov](https://www.alabamapublichealth.gov/newbornscreening/required-reporting.html))

Mandatory Reporting Data Elements

At a minimum, submit: the condition name; patient’s name, date of birth, sex, ethnicity, race, address, and phone number(s); date of laboratory result and/or date of diagnosis; and the reporter’s name, phone, and affiliated facility. For birth defects, Alabama specifically requires reporting the mother’s individually identifiable health information and demographics, plus any other information necessary to identify the patient and ensure accuracy and completeness. This is Protected Health Information (PHI) and must be handled accordingly. ([alabamapublichealth.gov](https://www.alabamapublichealth.gov/newbornscreening/required-reporting.html))

Patient Record Confidentiality and Access

Confidentiality of registry data

Case reports, supplemental questionnaires, working documents, and related medical or laboratory records collected for notifiable disease control—birth defects included—are confidential. They are not subject to public inspection, subpoena, or admission into evidence, except in limited proceedings under the chapter or with the patient’s written consent (and provided other persons are not identified). ([admincode.legislature.state.al.us](https://admincode.legislature.state.al.us/api/rule/420-4-1-.04))

De-identification and public release

ADPH may release aggregate or statistical information only after removing patient identifiers and applying de-identification standards; individual patient identifiers are never publicly released. ([admincode.legislature.state.al.us](https://admincode.legislature.state.al.us/administrative-code/420-12-1-.08?utm_source=openai))

Patient right of access (copies and viewing)

Patients have a federal right under HIPAA to access and obtain copies of their PHI, including records reflecting birth defect diagnoses. Alabama hospital rules add that facilities must not frustrate patients’ legitimate efforts to access their own records, and birthing center rules explicitly permit patients to request copies of their own and their newborn’s records, consistent with HIPAA. ([hhs.gov](https://www.hhs.gov/hipaa/for-professionals/privacy/guidance/access/index.html?utm_source=openai))

Public health disclosures without authorization

HIPAA expressly permits covered entities to disclose PHI to public health authorities, such as ADPH, for surveillance and prevention without obtaining patient authorization, provided only the minimum necessary data are disclosed. This is the legal basis for reporting birth defects data to the registry. ([hhs.gov](https://www.hhs.gov/hipaa/for-professionals/privacy/guidance/disclosures-public-health-activities/index.html?utm_source=openai))

Health Record Preservation Policies

Health Record Retention timelines vary by facility type. For hospitals, medical records must be retained at least five years; for minors, retain for at least five years after the patient reaches Alabama’s age of majority (19), effectively through at least age 24. ([admincode.legislature.state.al.us](https://admincode.legislature.state.al.us/api/rule/420-5-7-.13))

Birthing centers must preserve records for not less than six years after the most recent discharge; for minors, keep records for six years after the patient reaches legal age. Ambulatory surgical centers (if applicable to your operation) follow a similar six-year retention minimum and the same “six years after legal age” rule for minors. ([admincode.legislature.state.al.us](https://admincode.legislature.state.al.us/api/rule/420-5-13-.11))

Ownership and Control of Medical Records

Under Alabama rules, health records maintained by birthing centers and ambulatory surgical centers are the property of the facility; the administrator and governing authority are responsible for safeguarding, controlling access, and ensuring confidentiality. ([admincode.legislature.state.al.us](https://admincode.legislature.state.al.us/api/rule/420-5-13-.11))

Hospitals are required to protect and control records, release originals only as permitted by law, and maintain confidentiality. While “ownership” language is not always explicit for hospitals, they maintain custody and control of originals, while patients retain rights of access and copies under HIPAA and applicable state rules. ([admincode.legislature.state.al.us](https://admincode.legislature.state.al.us/api/rule/420-5-7-.13))

Reporting Procedures and Compliance

Step-by-step for perinatal ultrasound centers

• Confirm a reportable diagnosis during prenatal imaging or follow-up. If a listed defect is suspected or confirmed, initiate Perinatal Diagnostic Reporting promptly.
• Assemble the required data set: patient identifiers, diagnosis date, maternal demographics, and supporting details needed for accuracy and completeness.
• Submit within 30 days via ADPH’s secure REPORT Card portal or through automated electronic case reporting (eCR) if your hospital system supports it. ([alabamapublichealth.gov](https://www.alabamapublichealth.gov/newbornscreening/required-reporting.html))
• Designate a reporting lead to coordinate submissions, respond to ADPH queries, and document compliance with the State Health Officer’s directives.
• Embed privacy-by-design: restrict access to PHI, log disclosures, and ensure minimum necessary data are transmitted for public health purposes. ([hhs.gov](https://www.hhs.gov/hipaa/for-professionals/privacy/guidance/disclosures-public-health-activities/index.html?utm_source=openai))
• Audit quarterly: reconcile internal ultrasound findings against submitted reports, remediate gaps, and update staff training on Birth Defect Reporting Mandates and Medical Record Confidentiality Regulations.

Summary

In Alabama, perinatal centers must report specified birth defects within 30 days, include defined patient and maternal elements, and protect PHI under HIPAA and state confidentiality rules. Follow your facility-specific retention timelines, recognize that facilities control original records, and ensure patients can access copies. These practices align compliance with patient trust and public health goals.

FAQs

What birth defects must be reported to the Alabama registry?

Report anencephalus; anotia/microtia; atrioventricular septal defect; cleft lip and/or palate; common truncus arteriosus; gastroschisis; hypoplastic left heart syndrome; limb deficiencies; spina bifida; tetralogy of Fallot; total anomalous pulmonary venous connection; transposition of great arteries; and trisomy 21 (Down syndrome). ([alabamapublichealth.gov](https://www.alabamapublichealth.gov/newbornscreening/required-reporting.html))

How soon must perinatal centers report diagnosed birth defects?

Submit the report within 30 days of the diagnosis or associated laboratory test. This timeline applies to prenatal, delivery, and postnatal (through 12 months of age) diagnoses. ([alabamapublichealth.gov](https://www.alabamapublichealth.gov/newbornscreening/required-reporting.html))

Who owns the medical records of patients with birth defects?

For birthing centers and ambulatory surgical centers, Alabama rules state that health records are the property of the facility, which is responsible for control, safeguarding, and confidentiality. Hospitals maintain custody and control of originals and must release information only as permitted by law; patients retain rights to access copies under HIPAA. ([admincode.legislature.state.al.us](https://admincode.legislature.state.al.us/api/rule/420-5-13-.11))

Can patients access their birth defect health information?

Yes. Under HIPAA, patients have the right to access and obtain copies of their PHI. Alabama hospital rules require facilities not to frustrate access, and birthing center rules allow patients to request copies of their own and their newborn’s records, consistent with HIPAA. ([hhs.gov](https://www.hhs.gov/hipaa/for-professionals/privacy/guidance/access/index.html?utm_source=openai))