1 

DEPARTMENT OF HEALTH AND HUMAN SERVICES 

Centers for Disease Control and Prevention 

Privacy Act of 1974; System of Records 

AGENCY: Department of Health and Human Services, Centers for Disease Control and 

Prevention, National Institute for Occupational Health and Safety 

ACTION: Notification of proposed altered system of records. 

SUMMARY: The Department of Health and Human Services (HHS) proposes to alter System 

of Records, 09-20-0147, “Occupational Health Epidemiological Studies and EEOICPA Program 

Records, HHS/CDC/NIOSH” In accordance with the requirements of the Privacy Act, the 

Centers for Disease Control and Prevention (CDC) is publishing notice of the amendment of the 

categories of individuals covered by the system of records; the categories of records; the 

authorities; and the purposes for maintenance of the system of records. In addition, we are 

proposing to add new routine uses. The purpose of these modifications is to provide notice that 

the National Institute for Occupational Safety and Health (NIOSH) is complying with the 

Privacy Act in executing its responsibilities under the James Zadroga 9/11 Health and 

Compensation Act of 2010 found at Title XXXIII of the Public Health Service Act, 42 U.S.C. 

300mm – 300mm-61 (Title XXXIII). To reflect these changes, NIOSH is also revising the name 

of the system of records to “Occupational Health Epidemiological Studies, EEOICPA Program 
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Records and WTC Health Program Records, HHS/CDC/NIOSH.” The entire resulting system of 

records notice, as amended, appears below. 

DATES: Comments must be received on or before [ Insert date 30 days after the date of 

publication in the Federal Register]. In order to comply with the tight statutory deadline for 

implementation of the Zadroga Act, the changes in this system of records notice are effective 

immediately, except for the new routine uses, which will become effective 30 days from the date 

of publication unless CDC receives comments that require alterations to this notice. HHS has 

requested a waiver of the OMB review period in accordance with Appendix 1 of Circular A-130. 

ADDRESSEES: You may submit written comments, identified by the Privacy Act System of 

Records Number 09-20-0147, to the following address: HHS/CDC Senior Official for Privacy 

(SOP), Office of the Chief Information Security Officer (OCISO), 4770 Buford Highway – M/S: 

F-35, Atlanta, GA 30341. 

You may also submit written comments electronically to www.regulations.gov. Comments must 

be identified by Docket No. CDC-2011-0006. Please follow directions at www.regulations.gov 

to submit comments. 

All relevant comments received will be posted publicly to www.regulations.gov without change, 

including any personal or proprietary information provided. An electronic version of the draft is 

available to download at http://www.regulations.gov. 
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Written comments, identified by Docket No. CDC-2011-0006, and/or Privacy Act System of 

Records Number 09-20-0147, will be available for public inspection Monday through Friday, 

except for legal holidays, from 9 a.m. until 3 p.m., Eastern Daylight Time, at 4770 Buford 

Highway – M/S: F-35, Atlanta, GA 30341. Please call ahead to (770) 488-8660, and ask for a 

representative from Office of the Chief Information Security Officer (OCISO) to schedule your 

visit. Comments may also be viewed at www.regulations.gov. 

FOR FURTHER INFORMATION CONTACT: 

Beverly E. Walker, Chief Privacy Officer 

Centers for Disease Control and Prevention, 

4770 Buford Highway – M/S: F-35 

Atlanta, Georgia 30341, (770) 488-8660. This is not a toll-free number. 

SUPPLEMENTARY INFORMATION: CDC proposes to alter an existing system of records: 

09–20–0147, ‘‘Occupational Health Epidemiological Studies and EEOICPA Program Records, 

HHS/CDC/NIOSH,’’ last published at 76 FR 4463, January 25, 2011, to address World Trade 

Center Health Program records needed to carry out the James Zadroga 9/11 Health and 

Compensation Act of 2010, Title XXXIII of the Public Health Service Act (42 U.S.C. 

§§ 300mm – 300mm-61) (the Act). Under the WTC Health Program, the WTC Program 

Administrator is responsible for enrolling qualified individuals who responded to the New York 

City, Shanksville, PA, and Pentagon disaster sites and to qualified survivors of the New York 

City attacks; and to provide monitoring and treatment to eligible individuals for WTC related and 

WTC associated health conditions. Previously, a health screening program for responders began 
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in 2002 and was extended funding by Congress and implemented as a screening and care 

program under cooperative agreements with certain multidisciplinary clinical centers 

experienced with the WTC responder population. The program was again expanded in 2008 to 

provide initial health evaluations, diagnostic and treatment services for residents, students, and 

others in the community affected by the September 11, 2001, terrorist attacks in New York City. 

The Zadroga Act establishes the WTC Health Program within HHS, and so the program will 

assume the functions and goals of the cooperative agreement programs. Individuals who are 

eligible and qualified as WTC responders or screening-eligible and certified-eligible WTC 

survivors may receive an initial health evaluation, medical monitoring and treatment under the 

new WTC Health Program. Under this new authority, NIOSH will, for the first time, be directly 

responsible for applications for eligibility and provide for medical care under contracts. The 

changes to the system of records will enable NIOSH’s WTC Health Program to fulfill its new 

responsibilities under Title XXXIII. 

The following amendments are made to this system of records: 

System Name is changed to the “Occupational Health Epidemiological Studies, EEOICPA 

Program Records and WTC Health Program Records, HHS/CDC/NIOSH.” 

The System Location is being changed to add a new location for the WTC Health Program 

Records. 

Categories of individuals covered by the system of records is expanded by including the 

individuals enrolled or claiming eligibility in the WTC Health program, and by deleting the term 

“working” when describing the affected population, so as to include WTC survivors as well. 
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Categories of records is amended by adding the a description of records relating to eligibility and 

qualification for enrollment in the WTC Health program and records related to provision of 

treatment of enrollees for WTC related and WTC associated health conditions under the WTC 

Health Program. 

The authority and purpose for maintenance of the system of records are amended to include the 

new authority in the James Zadroga Health and Compensation Act of 2010, Public Health 

Service Act, Title XXXIII, “World Trade Center Health Program” (42 U.S.C. 300mm – 300mm61), and to explain this additional purpose. 

We have added one routine use of general applicability regarding litigation. We are taking the 

opportunity to use standard language recommended by OMB for use in litigation that applies to 

all records of this system of records. We are also adding one routine use of general applicability 

regarding disclosure to contractors. 

Two new routine uses are added that apply only to the WTC Health Program records. The first 

permits disclosure of information to enable coordination of benefits with federal, state, local or 

other workers compensation programs, or with public or private health plans, for which the 

beneficiary might also be eligible. 

One of the provisions of the Zadroga Act is that individuals who received medical monitoring 

and treatment benefits from the existing medical monitoring and treatment program prior to July 

1, 2011, continue to be qualified for the new program. However, such an individual is not 
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qualified to enroll in the new WTC Health program if the individual’s name is on the terrorist 

watch list. In order to implement this provision, NIOSH is publishing a second new routine use 

that would permit disclosure of certain personal identifying information to the Department of 

Justice and its contractors to provide terrorist screening support in accordance with this statutory 

obligation. 

The routine uses of the original system of records notice continue to be in effect. We have 

reorganized the routine uses to make clear which ones apply to which programs, and which are 

of general applicability. 

The storage and retrieval section is amended to make clear that records are retrieved by 

individual health care identifier number. 

The Retention and disposal section is changed to add a new retention and disposal period for 

WTC Health Program records. 

The System manager(s) and address section is amended to add a new system manager and 

address for the WTC Health Program records. 

CDC filed a modified or altered system of records report with the Chair of the House Committee 

on Oversight and Government Reform and the Chair of the Senate Committee on Homeland 

Security & Governmental Affairs. CDC has also filed a report with the Administrator, Office of 

Information and Regulatory Affairs, Office of Management and Budget (OMB), and has 
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requested waiver of OMB’s usual review period in accordance with Appendix I of OMB Circular 

A-130. 

A forthcoming rulemaking implementing the provisions of the Zadroga Act will appear in the 

Federal Register. 
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FEDERAL REGISTER BILLING CODE: 4163-18-P 

System name: Occupational Health Epidemiological Studies and EEOICPA Program 

Records and WTC Health Program Records, HHS/CDC/NIOSH 

Security classification: None. 

System location: WTC Health Program, NIOSH, Century Center Boulevard, Building 2400, 

Mail Stop E-74, Atlanta, GA 30329 

Division of Surveillance, Hazard Evaluation, and Field Studies (DSHEFS), National Institute for 

Occupational Safety and Health (NIOSH), Robert A. Taft Laboratories, 4676 Columbia 

Parkway, Cincinnati, OH 45226. 

Division of Respiratory Disease Studies (DRDS), National Institute for Occupational Safety and 

Health (NIOSH), 1095 Willowdale Road, Morgantown, WV 20505-2888. 

Pittsburgh Research Laboratory, NIOSH, 626 Cochrans Mill Road, Pittsburgh, PA 15156. 

Spokane Research Laboratory, NIOSH, 315 E. Montgomery Avenue, Spokane, WA 99207. 

Office of Compensation Analysis and Support (OCAS), NIOSH, Robert A. Taft Laboratories, 

4676 Columbia Parkway, Cincinnati, Ohio 45226 

and 

Federal Records Center, 3150 Bertwynn Drive, Dayton, OH 45439. 

Data are also occasionally located at contractor sites as studies are developed, data collected, and 

reports written. A list of contractor sites where individually identifiable data are currently located 

is available upon request to the system manager. 
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Also, occasionally data may be located at the facilities of collaborating researchers where 

analyses are performed, data collected and reports written. A list of these facilities is available 

upon request to the system manager. Data may be located only at those facilities that have an 

adequate data security program and the collaborating researcher must return the data to NIOSH 

or destroy individual identifiers at the conclusion of the project. 

Categories of individuals covered by the system: That segment of the population exposed to 

physical and/or chemical agents or other workplace hazards that may damage the human body in 

any way. Some examples are: 1) organic carcinogens; 2) inorganic carcinogens; 3) mucosal or 

dermal irritants; 4) fibrogenic materials; 5) acute toxic agents including sensitizing agents; 6) 

neurotoxic agents; 7) mutagenic (male and female) and teratogenic agents; 8) bio-accumulating 

non-carcinogen agents; 9) chronic vascular disease-causing agents; and (10) ionizing radiation. 

Also included are those individuals in the general population who have been selected as control 

groups. Workers employed by the Department of Energy and its predecessor agencies and their 

contractors are also included, as are cancer–related claimants under the Energy Employees 

Occupational Illness Compensation Program Act of 2000 (EEOICPA). Individuals enrolled in or 

otherwise claiming eligibility and qualification for enrollment in the WTC Health Program 

created under Title XXXIII of the Public Health Service Act. 

Categories of records in the system: Physical exams, sputum cytology results, questionnaires, 

urine test records, X-rays, medical history, pulmonary function test records, medical disability 

forms, blood test records, hearing test results, smoking history, occupational histories, previous 
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and current employment records, union membership records, driver's license data, demographic 

information, exposure history information and test results are examples of the records in this 

system. The specific types of records collected and maintained are determined by the needs of 

the individual study. Also included are records of cancer-related claimants under EEOICPA." 

Also included are applications for enrollment in the WTC Health Program and, once enrolled, 

screening and medical records, and financial records related to payment and reimbursements for 

care under the WTC program. 

Authority for maintenance of the system: Public Health Service Act, Section 301, "Research 

and Investigation" (42 U.S.C. 241); Occupational Safety and Health Act, Section 20, "Research 

and Related Activities” (29 U.S.C. 669); the Federal Mine Safety and Health Act of 1977, 

Section 501, "Research" (30 U.S.C. 951) and the Energy Employees Occupational Illness 

Compensation Program Act of 2000 (EEOICPA) (42 U.S.C.S. 7384, et seq.); and the Public 

Health Service Act, Title XXXIII, “World Trade Center Health Program” (42 U.S.C. 300mm – 

300mm-61). 

Purpose(s): Studies carried out under this system are to evaluate mortality and morbidity of 

occupationally related diseases and injuries, to determine their causes, and to lead toward 

prevention of occupationally related diseases and injuries in the future. EEOICPA records are 

maintained to enable NIOSH to fulfill its dose reconstruction responsibilities under the Act. 

WTC Health Program records in this system are maintained and used to enable NIOSH to fulfill 

WTC Program Administrator responsibilities make determinations about eligibility and 
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qualification, provide for medical care, pay for that care, and coordinate with other health benefit 

programs under Title XXXIII of the Public Health Service Act, 42 U.S.C. 300mm – 300mm-61. 

Routine uses of records maintained in the system, including categories of users and the 

purposes of such uses: 

In the event of litigation where the defendant is: (a) The Department, any component of the 

Department, or any employee of the Department in his or her official capacity; (b) the United 

States where the Department determines that the claim, if successful, is likely to directly affect 

the operations of the Department or any of its components; or (c) any Department employee in 

his or her individual capacity where the Department of Justice has agreed to represent such 

employee, for example, in defending a claim against the Public Health Service based upon an 

individual's mental or physical condition and alleged to have arisen because of activities of the 

Public Health Service in connection with such individual, disclosure may be made to the 

Department of Justice to enable that Department to present an effective defense, provided that 

such disclosure is compatible with the purpose for which the records were collected. 

Records may be disclosed to the Department of Justice when (1) HHS, or any component 

thereof; or (2) any employee of HHS in his or her official capacity; or (3) any employee of HHS 

in his or her individual capacity where the Department of Justice or HHS has agreed to represent 

the employee; or (4) the United States, is a party to litigation or has an interest in such litigation, 

and the use of such records by the Department of Justice is deemed by HHS to be relevant and 

necessary to the litigation; provided, however, that in each case it has been determined that the 

disclosure is compatible with the purpose for which the records were collected. 
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Records may be disclosed to a contractor performing or working on a contract for HHS and who 

has a need to have access to the information in the performance of its duties or activities for the 

HHS in accordance with law and with the contract. The contractor is required to comply with 

the applicable provisions of the Privacy Act. 

Records subject to the Privacy Act are disclosed to private firms for data entry, scientific support 

services, nosology coding, computer systems analysis and computer programming services. The 

contractors promptly return data entry records after the contracted work is completed. The 

contractors are required to maintain Privacy Act safeguards. 

Certain diseases or exposures may be reported to State and/or local health departments where the 

State has a legally constituted reporting program for communicable diseases and which provides 

for the confidentiality of the information. 

Disclosure of records or portions of records may be made to a Member of Congress or a 

Congressional staff member submitting a verified request involving an individual who is entitled 

to the information and has requested assistance from the Member or staff member. The Member 

of Congress or Congressional staff member must provide a copy of the individual's written 

request for assistance. 

Disclosure may be made to NIOSH collaborating researchers (e.g., NIOSH contractors, grantees, 

cooperative agreement holders, or other Federal or State scientists) in order to accomplish the 

research purpose for which the records are collected. The collaborating researchers must agree in 
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writing to comply with the confidentiality provisions of the Privacy Act and NIOSH must have 

determined that the researchers' data security procedures will protect confidentiality. 

THE FOLLOWING ROUTINE USES APPLY ONLY TO EPIDEMIOLOGICAL STUDIES 

In the event of litigation initiated at the request of NIOSH, the Institute may disclose such 

records as it deems desirable or necessary to the Department of Justice and to the Department of 

Labor, Office of the Solicitor, where appropriate, to enable the Departments to effectively 

represent the Institute, provided such disclosure is compatible with the purpose for which the 

records were collected. The only types of litigation proceedings that NIOSH is authorized to 

request are: (1) Enforcement of a subpoena issued to an employer to provide relevant 

information; and (2) administrative search warrants to obtain access to places of employment and 

relevant information therein and related contempt citations against an employer for failure to 

comply with a warrant obtained by the Institute; and (3) injunctive relief against employers or 

mine operators to obtain access to relevant information. 

Portions of records (name, Social Security number if known, date of birth, and last known 

address) may be disclosed to one or more of the sources selected from those listed in Appendix I, 

 as applicable. This may be done for obtaining a determination regarding an individual's health 

status and last known address. If the sources determine that the individual is dead, NIOSH may 

obtain death certificates, which state the cause of death, from the appropriate Federal, State or 

local agency. If the individual is alive, NIOSH may obtain information on health status from 

disease registries or on last known address in order to contact the individual for a health study or 
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to inform him or her of health findings. This information on health status enables NIOSH to 

evaluate whether excess occupationally related mortality or morbidity is occurring. 

Disclosure of epidemiologic study records pertaining to uranium workers may be made to the 

Department of Justice to be used in determining eligibility for compensation payments to the 

uranium workers or their survivors. 

Records may be disclosed by CDC in connection with public health activities to the Social 

Security Administration for sources of locating information to accomplish the research or 

program purposes for which the records were collected. 

THE FOLLOWING ROUTINE USES APPLY ONLY TO EEOICPA PROGRAM RECORDS: 

Disclosure of dose reconstructions, epidemiologic study records and employment and medical 

information pertaining to Department of Energy employees and other cancer-related claimants 

covered under the Energy Employees Occupational Illness Compensation Program Act may be 

made to the Department of Labor to be used in determining eligibility for compensation 

payments to such claimants and in defending its determinations under the Act. 

Disclosure of personal identifying information associated with cancer-related claims under the 

Energy Employees Occupational Illness Compensation Program Act may be made to the 

Department of Energy, other federal agencies, other government or private entities and to 

private-sector employers to permit these entities to retrieve records required to reconstruct 
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radiation doses and to enable NIOSH to evaluate petitions for inclusion in the Special Exposure 

Cohort. 

Completed dose reconstruction reports for cancer-related claims under the Energy Employees 

Occupational Illness Compensation Program Act may be released to the Department of Energy 

and the Department of Labor to permit these entities to fulfill EEOICPA and HHS dose 

reconstruction regulation requirements to notify claimants of their dose reconstruction results. 

Disclosure of personal identifying information associated with cancer-related claims under the 

Energy Employees Occupational Illness Compensation Program Act may be made to identified 

witnesses as designated by the Office of Compensation Analysis and Support to assist NIOSH in 

obtaining information required to complete the dose reconstruction process and to enable NIOSH 

to evaluate petitions for inclusion in the Special Exposure Cohort. 

Records may also be disclosed when deemed desirable or necessary, to the Department of 

Justice, and/or the Department of Labor, to enable those Departments to effectively represent the 

Department of Health and Human Services and/or the Department of Labor in litigation 

involving the Energy Employees Occupational Illness Compensation Program Act of 2000 

(EEOICPA). 

THE FOLLOWING ROUTINE USES APPLY ONLY TO WTC HEALTH PROGRAM 

RECORDS: 

Disclosure to the Department of Justice and its contractors provide terrorist screening support in 

accordance with NIOSH's statutory obligation to determine whether an individual is on the 
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"terrorist watch list" as specified in Section 3311 and Section 3321 of the Zadroga Act and is 

eligible and qualified to be enrolled or certified in the WTC Health Program as specified by 

statute. Disclosure will be limited to only the information that is necessary to determine 

eligibility and qualification under the statute. The Department of Justice and its contractors will 

only use the information for the purpose of determining eligibility and qualification for the WTC 

Health Program and will not retain the information for longer than is necessary to accomplish 

that purpose. Personal identifying information needed for this screening process will be 

destroyed or returned to NIOSH once it is determined that an individual is not on the “terrorist 

watch list.” 

Disclosure of personally identifying information to applicable entities for the purpose of 

reducing or recouping WTC Health Program payments made to individuals under a workers’ 

compensation law or plan of the United States, a State, or locality, or other work-related injury or 

illness benefit plan of the employer of such worker or public or private health plan as required 

under Title XXXIII of the Public Health Service Act. 

Policies and practices for storing, retrieving, accessing, retaining, and disposing of records 

in the system: 

Storage: Manager files, card files, electronic computer tapes, disks, files and printouts, 

microfilm, microfiche, and other files as appropriate. 

Retrievability: Name, assigned identification number, or social security number 

Safeguards: 
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1. Authorized Users: A database software security package is utilized to control 

unauthorized access to the system. Access is granted to only a limited number of 

physicians, scientists, statisticians, and designated support staff or contractors, as 

authorized by the system manager to accomplish the stated purposes for which the data in 

this system have been collected. 

2. Physical Safeguards: Hard copy records are kept in locked cabinets in locked rooms. 

Guard service in buildings provides screening of visitors. The limited access, secured 

computer room contains fire extinguishers and an overhead sprinkler system. Computer 

workstations and automated records are located in secured areas. Electronic anti-intrusion 

devices are in operation at the Federal Records Center. 

3. Procedural Safeguards: Data sets are password protected and/or encrypted. Protection 

for computerized records both on the mainframe and the NIOSH Local Area Network 

(LAN) includes programmed verification of valid user identification code and password 

prior to logging on to the system, mandatory password changes, limited log-ins, virus 

protection, and user rights/file attribute restrictions. Password protection imposes user 

name and password log-in requirements to prevent unauthorized access. Each user name is 

assigned limited access rights to files and directories at varying levels to control file 

sharing. There are routine daily backup procedures and secure off-site storage is available 

for backup tapes. Additional safeguards may be built into the program by the system 

analyst as warranted by the sensitivity of the data. 

Employees and contractor staff who maintain records are instructed to check with the system 

manager prior to making disclosures of data. When individually identified data are being used in 

a room, admittance at either government or contractor sites is restricted to specifically authorized 
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personnel. Privacy Act provisions are included in contracts, and the Project Director, contract 

officers and project officers oversee compliance with these requirements. Upon completion of 

the contract, all data will be either returned to CDC or destroyed, as specified by the contract. 

4. Implementation Guidelines: The safeguards outlined above are in accordance with the 

HHS Information Security Program Policy and FIPS Pub 200, “Minimum Security 

Requirements for Federal Information and Information Systems.” Data maintained on 

CDC’s Mainframe and the NIOSH LAN are in compliance with OMB Circular A-130, 

Appendix III. Security is provided for information collection, processing, transmission, 

storage, and dissemination in general support systems and major applications. Security is 

provided for information collection, processing, transmission, storage, and dissemination 

in general support systems and major applications. The CDC LAN currently operates 

under a Microsoft Windows Server and is in compliance with applicable security 

standards. 

Retention and disposal: Records are retained and disposed of according to the 

provisions of the CDC Electronic Records Control Schedule for NIOSH records. 

Research records are maintained in the agency for three years after the close of the study. 

Records transferred to the Federal Records Center when no longer needed for evaluation 

and analysis are destroyed after 75 years for epidemiologic studies, unless needed for 

further study. Records from health hazard evaluations will be retained at least 20 years. 

EEOICPA program records are transferred to the Federal Records Center 15 years after 

the case file becomes inactive and are destroyed after 75 years. WTC Health Program 

records are transferred to the Federal Records Center 15 years after the case file becomes 
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inactive and are destroyed after 75 years. Any records provided to the Department of 

Justice for the purpose of screening individuals against the “terrorist watch list” will be 

destroyed (and not retained by the Department of Justice) once it is determined that an 

individual is not on the “terrorist watch list.” 

Paper files that have been scanned to create electronic copies are disposed of after the copies are 

verified. Disposal methods include erasing computer tapes and burning or shredding paper 

materials. 

System manager(s) and address: Director, WTC Health Program, NIOSH, Century Center 

Boulevard, Building 2400, Mail Stop E-74, Atlanta, GA 30329. 

Program Management Officer, Division of Surveillance, Hazard valuations, and Field Studies 

(DSHEFS), National Institute for Occupational Safety and Health (NIOSH), Robert A. Taft 

Laboratories, Rm. 40A, 4676 Columbia Parkway, Cincinnati, OH 45226. 

Director, Division of Respiratory Disease Studies (DRDS), National Institute for Occupational 

Safety and Health (NIOSH), Bldg. ALOSH, Rm. H2920, 1095 Willowdale Road, Morgantown, 

WV 26505-2888. 

Director, Pittsburgh Research Laboratory, NIOSH, 626 Cochrans Mill Road, Pittsburgh, PA 

15156. 

Director, Spokane Research Laboratory, NIOSH, 315 E. Montgomery Avenue, Spokane, WA 

99207. 
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Director, Office of Compensation and Support (OCAS), NIOSH, Robert A. Taft Laboratories, 

4676 Columbia Parkway, Cincinnati, OH 45226 

Policy coordination is provided by: Director, National Institute for Occupational Safety and 

Health (NIOSH), Bldg. HHH, Rm. 715H, 200 Independence Avenue, SW, Washington, D.C. 

20201. 

Notification procedure: An individual may learn if a record exists about himself or herself by 

contacting the system manager at the above address. Requesters in person must provide driver's 

license or other positive identification. Individuals who do not appear in person must either: (1) 

submit a notarized request to verify their identity; or (2) certify that they are the individuals they 

claim to be and that they understand that the knowing and willful request for or acquisition of a 

record pertaining to an individual under false pretenses is a criminal offense under the Privacy 

Act subject to a $5,000 fine. 

An individual who requests notification of or access to medical records shall, at the time the 

request is made, designate in writing a responsible representative who is willing to review the 

record and inform the subject individual of its contents at the representative's discretion. A 

subject individual will be granted direct access to a medical record if the system manager 

determines direct access is not likely to have adverse effect on the subject individual. 

The following information must be provided when requesting notification: (1) full name; (2) the 

approximate date and place of the study, if known; and (3) nature of the questionnaire or study in 

which the requester participated. 
21 

Record access procedures: Same as notification procedures. Requesters should also reasonably 

specify the record contents being sought. An accounting of disclosures that have been made of 

the record, if any, may be requested. 

Contesting record procedures: Contact the official at the address specified under System 

Manager above, reasonably identify the record and specify the information being contested, the 

corrective action sought, and the reasons for requesting the correction, along with supporting 

information to show how the record is inaccurate, incomplete, untimely, or irrelevant. 

Record source categories: For research studies, vital status information is obtained from 

Federal, State and local governments and other available sources selected from those listed in 

Appendix I, but information is obtained directly from the individual and employer records, 

whenever possible. EEOICPA records are obtained from the individual subject and the 

employer’s records. WTC Health Program Records are obtained from individual applicants and 

enrollees, from medical providers who have treated eligible individuals, and from data centers 

that are repositories of demographic and clinical information about WTC responders and 

survivors. 

Systems exempted from certain provisions of the act: None. 

APPENDIX I - Potential Sources for Determination of Health Status, Vital Status and/or 

Last Known Address: 
22 

Military records 

Appropriate State Motor Vehicle Registration Departments 

Appropriate State Driver's License Departments 

Appropriate State Government Division of: 

Assistance Payments (Welfare), Social Services, Medical Services, Food Stamp Program, Child 

Support, Board of Corrections, Aging, Indian Affairs, Worker's Compensation, Disability 

Insurance 

Retail Credit Association follow-up 

Veterans Administration files 

Appropriate employee union or association records 

Appropriate company pension or employment records 

Company group insurance records 

Appropriate State Vital Statistics Offices 

Life insurance companies 

Railroad Retirement Board 

Area nursing homes 

Area Indian Trading Posts 

Mailing List Correction Cards (U.S. Postal Service) 

Letters and telephone conversations with former employees of the same establishment as cohort 

member 

Appropriate local newspaper (obituaries) 

Social Security Administration 

Internal Revenue Service 
23 

National Death Index 

Centers for Medicare & Medicaid Services 

Pension Benefit Guarantee Corporation 

State Disease Registries 

Commercial Telephone Directories 
24 

DATE May 25, 2011 

James D. Seligman 

Chief Information Officer 

Centers for Disease Control and Prevention 

BILLING CODE: 4163-18-P 

[FR Doc. 2011-13470 Filed 05/26/2011 at 11:15 am; Publication Date: 06/01/2011]