Outpatient Pulmonary Registry Frequently Asked Questions

Table of Contents:

Why Participate?

Q: Why should our program participate in the registry?
A: The AACVPR Outpatient Pulmonary Rehabilitation Registry will establish both program-based and national outcomes for pulmonary rehabilitation. Through the registry, pulmonary rehabilitation programs will be able to:

  • Create and manage patient profiles
  • Enter and view outcomes data on enrolled patients in real time
  • Track and quantify progress of their program in meeting performance goals
  • Produce individual and grouped outcomes reports

By assisting in the collection, management, and interpretation of outcomes data, the registry will help pulmonary rehabilitation programs:

  • Compare outcomes and processes to evidence-based goals and national benchmarks
  • Implement quality improvement projects based on real data
  • Enhance documentation and communication with the program’s key audiences, such as hospital administrators, referring physicians, insurers, and case managers
  • Promote the role and effectiveness of pulmonary rehabilitation in the management of chronic lung disease
  • Increase support from physicians
  • Improve 3rd-party payer coverage and reimbursement rates

Q: Can small pulmonary rehabilitation programs benefit and make a difference?
A: Every program’s data is valuable and makes a difference. For benchmarking, the registry offers reports that show how your patient outcomes compare not only to general averages across the country but also to programs in your state and to similar-size programs. The information you get from the registry will help you manage your patients’ outcomes data and build a better program.

In fact, small programs may have the most to gain. You get an easy-to-use tool to:

  • Organize the collection, analysis, and reporting of outcomes
  • Demonstrate program performance to your administrators, physicians, and medical director

Plus, you’ll get the support of AACVPR and experts working on the registry – all for a very fair price.

Q: What is the expected number of hours required to participate in the registry?
A: The time requirements for entering patient data will vary depending on your familiarity with the interface, your access to the data that you are entering, and the amount of data you enter. Once you are familiar with navigating the interface, and understand the field definitions, it is estimated that it would take approximately five to 10 minutes to enter a complete patient record.


Q: How do I subscribe to the registry?
A: To subscribe your program to the AACVPR Outpatient Pulmonary Rehabilitation Registry and start entering data, you must:

  • Establish a principal user for the registry
  • Provide program information
  • Provide your program roster, including at least one secondary user
  • Submit a signed Participation Agreement
  • Submit the subscription payment
  • Complete the two-step training process

Step-by-step instructions are available. You are encouraged to share the Participation Agreement with your administrators for signature in advance of submitting payment. (Read more about the Participation Agreement.)

To get started on teh subscription process, complete the Registry Principal User Contact Form here..

Q: What is the cost to participate in the registry?
A: Participation in the registry is based on an annual program subscription (valid July 1 through June 30). The fee is dependent on program size, based on the number of new Phase 2 patients who enroll in your program annually. AACVPR is working to keep prices low and is also exploring discounts for AACVPR-certified programs. The current fee structure is as follows:

Payment Received between April 1 – December 31: 12-month subscription fee valid through June 30 of following year. These prices are valid for programs joining between April 1 and December 31 of 2017. 

  • Annual enrollment of fewer than 25 patients - $250/year
  • Annual enrollment of 25-75 patients - $275/year
  • Annual enrollment of more than 75 patients - $300/year

Payment Received between January 1 – March 31: 18-months subscription fee valid through June 30 of following year.These prices are valid for programs joining between January 1 and March 31 of 2017. 

  • Annual enrollment of fewer than 25 patients - $375/year
  • Annual enrollment of 25-75 patients - $410/year
  • Annual enrollment of more than 75 patients - $450/year

Q: When can our program start using the registry?
A: Subscribing programs can enter patient data as soon as they have (a) established a principal user for the registry; (b) provided their program information; (c) provided their program roster, including at least one secondary user; (d) submitted a signed Participation Agreement; (e) submitted the subscription payment; (f) completed the two-step training process; and (g) updated program procedures as necessary to conform to the registry data definitions.

Each user must complete the mandatory training to obtain a login to the registry. Registry access is provided via individual, not program-wide, login.

Q: What does the mandatory training entail?
A: All registry users must complete a two-part training process – (1) view a one-hour training Webcast and (2) complete a 15- to 20-minute online training exercise – to gain access to the registry. The Webcast provides a tour of the registry platform and gives details about data entry and reports. The online training exercise helps familiarize users with the registry by guiding them through a sample patient record; during the training, users must enter sample data and successfully navigate through the registry interface.

All registry users will also have access to a registry user’s guide, data definitions and comments, and other assessment tools and resources to facilitate the entry of consistent data from each program. The principal user is responsible for updating your program procedures so that the outcomes data you collect for the registry is accurate and compliant with registry definitions. This is to ensure that we have the highest quality data available for the registry. Once your program’s procedures are updated, you can start entering data into the registry. Exhibit A in the Participation Agreement provides a description of the role of the principal user.

Please note: Each program staff member who will be using the registry must complete both portions of the training – the Webcast and the online training exercise – and will receive his or her own link for the training exercise and for the live registry. Please do not share this link with your colleagues.

Data Collection

Q: I have to log back in every time after viewing a report in the registry. Why won't it stay logged in? What am I doing wrong?
Nothing. When this happens, it is usually because the security settings of your browser are set to prevent a security breach when connected to the registry site.  You can fix this by making the registry URL a "trusted site".  You can read the Help Information in your browser on how to add a website to your trusted sites list, do a web search on "how to add trusted sites to browser", or go to www.wikihow.com/Add-a-Website-to-Trusted-sites for instructions (for Internet Explorer only).  The pulmonary registry URL is https://registry.pulmonary.aacvpr.org/

Q: Who is able to access our program’s data?
A: Registry subscribers have access only to their program’s patient information and to aggregated data from the registry as a whole. Subscribers are not able to access or view other programs’ data. AACVPR-approved nonsubscribers, such as researchers, have access only to aggregated and/or de-identified registry data. The data will be de-identified with respect to patient and program identifiers unless specifically permitted by the participating programs and required by the researcher. Hospital systems with multiple participating programs may request files of de-identified patient data from all programs within their system.

In addition, registry subscribers and AACVPR sign a Participation Agreement for limited data use giving AACVPR access to patient-specific information. AACVPR may use this information to provide reports of national outcomes and trends and to track morbidity and mortality rates. (Read more about the Participation Agreement.)

Q: Will we still be able to use our current patient management system?
A: AACVPR is working with its corporate partners to develop methods for transferring data from their applications to the registry. Your company’s technical support or sales representative should contact you regarding implementation.

If your program uses a paper-based patient management system, the registry provides an easy-to-use graphical user interface (GUI) that utilizes table-driven lookups and checkboxes to minimize typing and has multiple levels of validation to ensure data is entered correctly before it is submitted. You may decide to modify your current paper-based practices to complement the registry.

For more information about the application programming interface (API) documentation or file uploads from existing data applications, contact AACVPR Headquarters at 312/321-5146, option 1.

Q: Will we need to change any of our program’s policies or procedures?
A: In order to standardize definitions so that all programs are measuring the same outcomes, you may have to modify your procedures so the data you collect conforms to the registry standards. Registry resources include a list of data definitions and comments, as well as references to various supported assessment tools and measurement protocols. If your program is using an assessment tool that is not supported by the registry, you may continue to use that tool; you simply won’t be able to enter the score/data into the registry. You will need to keep that data in a separate database or spreadsheet.

Q: What data is being collected in the registry?
A: The data set includes:

  • Patient demographics
  • Medical history, including:
    o Admitting diagnosis
    o Additional pulmonary diagnoses
    o Comorbid conditions
  • Referral and enrollment dates
  • Healthcare utilization, including exacerbations and untoward events
  • Pre- and post-clinical data and assessment tools, including:
    o Pulmonary function tests
    o Oxygen use, system and prescription
    o Dyspnea
    o Health-related quality of life
    o Tobacco use
    o Anthropometric data
    o Functional capacity and physical activity
    o Psychosocial status

Not all of the data fields included in the registry are required fields; only a medical record ID and enrollment date must be completed in order to save a record. Programs should collect and enter as much information as their resources allow, however. The more data entered, the better the feedback will be with respect to overall program performance.

Click here for a more detailed list of data elements in the registry.

Q: Our program doesn’t use the same measurement tools and tests as the registry. Can we still participate?
A: Yes, you can. Many of the variables in the registry are not required; you don’t have to enter the data if you don’t have it or don’t use the tool. Also, it is okay to use tools that are not in the registry; you just won’t be able to enter the scores into the registry and will not be able to get feedback on your patients’ scores compared to other programs. What’s more important is that you are using validated tools and are using the scores to educate your patients and provide appropriate and individualized services based on the results. However, you may want to review some of the tools that are supported in the registry and see whether your current tools could be updated to these. Click here to see the data elements collected in the registry and the supported assessment tools.

Q: Where would one gain access to registry outcome measuring tools, as our program doesn't currently use some of them?
A: A great reference for measuring outcomes is the AACVPR Pulmonary Rehabilitation Outcomes Resource available online to registry subscribers and AACVPR members. The toolkit includes the following sections:
• Functional Status/Exercise Capacity
• Dyspnea Measurement
• Quality of Life
• Psychosocial
• Chronic Lung Disease Assessment Tools and Resources (including COPD Assessment Test, METs, FEV1, BODE Index, and 6MWT)
• References

Q: At what point will you consider other outcome measures, and how does one suggest other tools to be included in the registry?
A: A limited number of additional tools and measures could be added to the registry based on the level of validation, reliability, and use in PR programs and research. Please forward any related comments and supporting documentation to registry@aacvpr.org.

Q: For follow-up, how do you define at six (6) months from start of care? Is it from start of PR program?
A: Yes, the six months is being calculated from the start of the patient’s pulmonary rehabilitation program.

Processes of Record Creation, Completion, Deletion

Q: If a patient is going through pulmonary rehab for the second time (sessions 37–72), how do you differentiate record 1 for the first series from record 2? 
A: This is a complicated question. If we assume that the “second time” is just an extension of the “first time” (i.e., no new events or referrals have occurred), then you wouldn’t create a new record; you are just extending the length of the first referral. 

If, however, the patient has had another event that precipitates a new referral, you would create a new record. When you try to add a new patient record for a patient who already exists in the registry, you will be asked whether you want to proceed in entering the new record; select yes. The new record will differ from the previous record by the enrollment date and the unique registry ID. 

DO NOT delete data that has been entered for the patient’s first enrollment or overwrite it with the new information, as you would no longer have a record of the previous enrollment.

Q: If a patient does not complete the PR program, do we have to enter their data into the registry? If so, how much of the data do we have to enter?
A: If a patient does not complete the PR program (defined as not receiving a final, formal discharge exercise assessment, review of secondary risk factors, and updated treatment plan), at a minimum you should enter as much demographic, medical history, program, and program admission data as possible. This information will be helpful in describing patients who drop out. Also be sure to enter the number of sessions the patient completed, the date of their last exercise session as the Discharge Date, and the reason for non-completion.

Q: How do we record information for a patient going through pulmonary rehab again? 
A: If you enter the medical record ID of a patient who is already in the registry, a warning message will be displayed and you will have three options: 1) cancel and enter a different medical record ID; 2) open the existing record for editing; or 3) continue to add the record to the database. Choose the third option to enter all new information for a patient’s second (or third or fourth, etc.) enrollment as needed. This will become a new patient record, though with the same medical record ID as the previous.

If you do not see an option in the warning message to add a new record for the patient, make sure the patient’s current or most recent record has been marked as either “Completed” or “Did not complete” in the Program tab and a discharge date has been entered (or last exercise session date if the patient is a dropout).  You MUST enter a medical record number (or other locally determined unique identifier) in order to add a second record; otherwise you will only have the option to modify the existing record.

Please DO NOT delete data that has been entered for the patient’s first enrollment or overwrite it with the new information, as you would no longer have a record of the previous enrollment.

Q: If a patient has a readmission or procedure during the course of his/her Phase 2 program, do we start a new record or continue the existing one? 
A: It depends. Think of each record in the Registry as a referral and the outcome of that referral. If a patient has another event and a new referral is created AND you decide to start his/her program anew, create a new registry record. In the original record you would note that the patient did not complete the program, providing the reason for non-completion, the Discharge Date (the last exercise session attended), and the total number of sessions completed. You would not complete any other discharge information except for the Hospitalization section, noting the procedure or event that caused the hospitalization. Add a new record as you normally would through the Patient List page. When attempting to add the new record, you’ll see a warning message stating the patient already exists in the Registry. At this point you have 3 options: 1) You can cancel the transaction and return to the Patient List page; 2) you can open the existing record for editing, or 3) you can proceed to add the new record. Select the third option to add the new record.  You MUST enter a medical record number (or other locally determined unique identifier) in order to add a second record; otherwise you will only have the option to modify the existing record.

If you decide that you will simply extend the patient’s original program using the original referral from the first event/procedure, you would not create a new record. You would note the procedure/hospitalization on the Hospital Utilization tab in the patient’s existing record and complete the record when the patient ultimately graduates.

Note that you can create a new record on any existing patient for any reason as long as the previous record has been marked as either “Completed” or “Did not complete” and a Discharge Date has been entered.


Q: What reports will we be able to view?
A: Pre-configured reports will include:

  • Individual Patient Report showing the patient’s pre- and post-program values, percent change, and comparison to secondary prevention goals
  • Grouped Outcomes (Program) Report showing aggregated pre- and post-outcomes and change in scores
  • Performance Measures Report, designed to assess the program’s success at getting its patients to national guideline goals in secondary prevention areas

Reports will reflect user-specified time frames and may be sorted by diagnosis, age, sex, and/or clinical status. Reports can be pulled at any time, and programs can also create customized data queries. All reports can be downloaded in Excel format. In addition, internal reports will allow ongoing calculation of national benchmark data by AACVPR, while a special interface will allow aggregated data mining by approved outside agencies.

Please note: Until there is a critical amount of data in the registry, program-level reports and aggregated data may not be very meaningful. Comparative data may change significantly as more records are added.

Q: How will the registry ensure accuracy of data?
A: Each participating program must designate a principal user who is responsible for monitoring data integrity. Every registry user will be required to complete the registry training before gaining access, and must familiarize themselves with the data definitions established for the registry. In addition, the registry will apply rigorous data validation techniques.

Q: Will outcome metrics be benchmarked as a percentile rank for best practice identification and performance improvement projects?
A: Yes.

Q: Will we get an aggregate program score for the comorbidity index as compared to other programs?

A: Yes, the aggregate program score for the comorbidity index is part of the reporting and comparison options.
Please note that this aggregate score is not intended for use in risk adjustment comparisons.

Q: Will raw patient data be exportable into Excel or another flat file?

A: The registry’s Data Extraction utility provides data in Microsoft Excel® format. Please note that your program can only extract data that your program has entered. You will not be able to extract data from other programs.

Q: Will the registry data be available for research and statistical purposes?
A: There will be a procedure for accessing and using data for research; this process is separate from registry subscription and data entry by a program.If you are a researcher interested in accessing the data, please contact registry@aacvpr.org.

Pulmonary Function/Spirometry

Q: What if only pre-program PFT/Spirometry is performed? Are you expecting programs to request an order for PFTs post-discharge and follow-up?
A: If only one PFT is available, no others are required. The additional fields are included in the registry to allow you to enter the data at discharge and follow-up if it is available, but they are not required fields. Please use the most recent PFT.

Q: Do you want Pulmonary Function/Spirometry data from within the last year only?
A: The registry does not require that PFT be done within the past year. Please use the most recent PFT.

Q: Will Medicare pay for a PFT pre and post program?
A: Not necessarily. Medicare coverage is normally based on a physician’s order and what is medically reasonable and necessary. Post PR PFT is not required by the registry. If it is obtained, however, please include it in the registry data.

Q: Can we use bedside spirometry to meet the standards?
A: Spirometry must meet ATS standards for quality and reproducibility and must be performed and interpreted by skilled, trained, qualified clinical personnel. If the spirometry meets those requirements, it can be bedside spirometry. Read more in “Standardization of Spirometry,” Eur Respir J. 2005; 26:319-338.

Q: On Psychosocial, the data entry form also has CES-D listed. Is the CES-D an acceptable tool to use, and will AACVPR collect this data in the registry?
A: Yes, the CES-D is one of the included options in the registry for recording Psychosocial Scores.

Patient Privacy and HIPAA Compliance

Q: Do patients need to provide consent to have their data included in the registry?
A: The purpose of the registry is to monitor patient outcomes and promote quality improvement efforts. HIPAA provides that, in this case, the program can disclose the patient’s PHI to the registry without the need for separate patient consent.

Q: Do I need to get Institutional Review Board (IRB) approval before using the registry?
A: The AACVPR Outpatient Pulmonary Rehabilitation Registry is a quality assurance database and does not involve human subjects research as defined by the Office for Human Research Protections in the US Dept of Health and Human Services. As such, it has been determined that the registry does not require IRB oversight. Individual institutions, however, may require quality assurance activities to have IRB review. Programs should verify with their administration that participation in the registry complies with institutional requirements. In addition, a request to use data from the registry for a research project may require IRB review from the investigator’s own IRB. The registry protocol document is available for use as a starting point if needed; click here to download the protocol.

Q: What is the Participation Agreement?
A: Because of the inclusion of PHI, each participating program will need to have a signed Participation Agreement on file with AACVPR before it can enter or submit data to the registry. This agreement includes both a business associate agreement and a data use agreement. It is a standard legal document that identifies:

  • The parties that are sharing PHI – in this case, AACVPR and your program – and their responsibilities in maintaining the confidentiality and security of PHI
  • Who owns the data
  • What data each party can expect to get back
  • Who is liable if security is breached

Click here to download the AACVPR Outpatient Pulmonary Rehabilitation Registry Participation Agreement. Please present this document to your administrators, as it is very specific about how AACVPR can use data and closely follows basic HIPAA requirements.

In order to make the submission process as efficient as possible for you and for us, please do the following:

  • Read the Legal FAQs for the Participation Agreement Process
  • Insert the full and legal name of the entity that will be entering into the agreement on page 12 where indicated;
  • In section 9.12, add the address where you would like notices sent, including the name of the person to whom the notice should be addressed;
  • If you have any requested revisions, please make those revisions directly on the document in a way that clearly shows the changes (e.g., “track” changes in the Word document); and
  • Please do not make revisions and send us a PDF document. We cannot accept PDFs. Please send back a Word document with your tracked changes.

Signed participation agreements should be emailed to registry@aacvpr.org; or mailed to AACVPR Headquarters, Attn: Registry, 330 N. Wabash Ave., Suite 2000, Chicago, IL 60611; or faxed to 312/673-6924.

Q: Can we use our hospital’s business associate agreement instead?
A: The AACVPR Registry Participation Agreement includes a fully compliant HIPAA Business Associate Agreement (BAA).  AACVPR cannot agree to use any form other than the BAA that is included within the Registry Participation Agreement, as this BAA is specifically tailored to the Registry and specifies how AACVPR can and cannot use and disclose PHI related to this specific Registry. The Registry Participation Agreement also includes a HIPAA Data Use Agreement, which is required to participate in the Registry. The Registry Participation Agreement has other provisions related to the BAA and Data Use Agreement as well; therefore, the use of any other agreement would require further revisions.  For these reasons, AACVPR must insist on the BAA and Data Use Agreements that are included within the Registry Participation Agreement.  If you feel it is appropriate, you can make revisions to the BAA section of the Registry Participation Agreement and AACVPR legal counsel will review such revisions and decide whether to accept such revisions. If you would like to propose revisions, please send a Word document with your tracked changes to the Registry Participation Agreement to registry@aacvpr.org.

The Registry & Medicare

Q: How many outcomes are required by Medicare and which ones are they?
A: Medicare requires objective clinical measures of effectiveness of the pulmonary rehabilitation program for individual patients based on patient-centered outcomes conducted at the start and end of the program. Those outcomes include written evaluation of the patient’s mental and emotional function (including psychosocial evaluation of the individual’s response to and rate of progress under the treatment plan), exercise performance, and self-reported measures of shortness of breath and behaviors.

Q: Does Medicare require the same outcomes for cardiac and pulmonary rehabilitation? If not, can you please clarify which are required for each?
A: The outcomes measured in cardiac and pulmonary rehabilitation are not the same, though the concepts/areas measured are.

For PR patients per CMS: “Objective clinical measures of effectiveness of the pulmonary rehabilitation program for individual patients, including: Written evaluation of patient’s mental and emotional function including psychosocial evaluation of individual’s response to and rate of progress under the treatment plan, exercise performance, self-reported measures of shortness of breath and behaviors based on patient-centered outcomes conducted at the start and end of the program.” Therefore, exercise performance, i.e., some functional assessment (typically the 6-minute walk test), measures of shortness of breath and its impact on daily activities, and psychosocial assessment, including emotional and mental functioning, should be measured for PR outcomes. Screening for depression or anxiety are some of the areas that can be assessed for the psychosocial outcome.

Per current CMS regulations for CR programs: “Outcomes assessment: These should include: (i) minimally, assessments from the commencement and conclusion of CR, based on patient-centered outcomes which must be measured by the physician immediately at the beginning and end of the program, and (ii) objective clinical measures of the effectiveness of the CR program for the individual patient, including exercise performance and self-reported measures of exertion and behavior.” Note there is no mention of what outcomes need to be measured specifically. AACVPR takes the above to mean the CR program should measure pre/post outcomes in several patient-centered areas, including clinical, behavioral, and health domains. AACVPR has required that at least one (1) outcome (though more are recommended) be measured in each area for certification purposes.

The commonalities between CR and PR outcomes assessment are that, minimally, for each patient you should assess physical functioning, psychosocial functioning, and symptoms. These are components of what has been defined as “patient-centered health status.”

Q: Will Ferrans & Powers cover Psychosocial?
A: The Ferrans & Powers Quality of Life Index (QLI) is a measure of health-related quality of life and in the context of the AACVPR Registry would not be used for a patient’s psychosocial score. However, a validated tool used for evaluation depression and/or anxiety would be used for a patient's psychosocial score. See the Pulmonary Rehabilitation Outcome Resource Tool for examples of both quality of life and depression / anziety assessment tools.

AACVPR Program Certification Integration

Q: How will this affect my AACVPR Program Certification?
A: The AACVPR Outpatient Pulmonary Rehabilitation Registry is integrated with the AACVPR Certification Center. Programs that participate in the registry can use their registry data to complete their program's clinical outcomes assessment. A direct link within the certification application will populate your registry data for easy transfer into the application fields.

The Registry is being developed by Cissec Corporation of Kingston, Ontario, in cooperation with SmithBucklin and AACVPR.

Q: Who is Cissec Corporation?
A: Cissec Corporation, a Canadian-based software development firm specializing in healthcare technology, is responsible for the IT development of the AACVPR Outpatient Pulmonary Rehabilitation Registry. Cissec is an experienced vendor that has created previous registries, including the AACVPR Outpatient Cardiac Rehabilitation Registry and the Canadian Association of Cardiac Rehabilitation’s Canadian Cardiac Rehab Registry. AACVPR and the pulmonary rehabilitation experts who make up its Registry Committee have developed the registry content and will oversee its operations.


Please direct any questions regarding the registry to AACVPR Headquarters at registry@aacvpr.org or by calling 312/321-5146.