For Members
Clinic Directory
The ACHD Clinic Directory offers comparative information on all self-identified ACHD clinics in the United States, Canada, and the United Kingdom that currently participate in the ACHA/ISACCD ACHD Clinic Survey Project. All data in the ACHD Clinic Directory is self-reported and has not been independently verified. These clinics vary widely in size, training, and services offered. Before using the ACHD Clinic Directory, ACHA recommends you read How to Use the ACHD Clinic Directory (below).
ACHA does not endorse or recommend any particular ACHD Clinic. ACHA does endorse the 32nd Bethesda Conference Guidelines, which state that many ACHD patients should be seen regularly at a highly-specialized ACHD center. For more information on ACHD care guidelines and to see if special ACHD care is recommended for you, click here.
To access the full Clinic Directory, click on the graphic below:
This is the second edition of the ACHA/ISACCD ACHD Clinic Directory. The 2006 Clinic Directory displays statistics drawn from 1/1/06-12/31/06. We have not yet completed our data collection from several clinics that submitted data in 2005, so you may notice some clinics are missing—we will make data available as we receive them. Click here to see the list of 2005 Clinic Directory participants.
How to Use the ACHD Clinic Directory
The fact that a clinic is listed does NOT mean that it meets standards for specialized ACHD care. All self-identified ACHD clinics which return our survey are included in the Clinic Directory. The clinics vary greatly in size, expertise, and services offered. In addition, all information is SELF-REPORTED and UNVERIFIED. We encourage you to ask your own questions and learn all you can about the ACHD clinics listed here. A list of recommended questions to ask can be found here.
In using the Clinic Directory, we suggest you look at the following factors:
Total number of ACHD patients seen per year: Experience counts, particularly given the wide variety of defects, health problems, previous surgeries, etc., in adult congenital heart disease. However, please note that many centers submitted estimated numbers. Accuracy may vary.
Total number of ACHD clinics per week: A higher number of clinics a week may reflect a greater commitment to an ACHD program.
Year of founding: This may be a measure of a special interest in ACHD patients over time. However, newer centers may also offer expertise, special training, and rapidly-growing volume.
Background and training of director and staff: Each program description includes information on the training and background of ACHD clinic staff. Younger ACHD cardiologists may have trained specifically in a new adult congenital cardiology program. Others will have trained as either a pediatric or adult cardiologist, but should also list specific training and background in adult congenital heart disease. (For example, years of direct experience treating adults with CHD, time spent training at other ACHD clinics.) Training dates can help you decide whether ACHD training is current and on-going.
Special services offered: There may be particular services, such as high-risk ACHD pregnancy care, that are of special interest to you.
Location: Some people choose the closest center with self-identified ACHD expertise. Others choose to travel out of area. If you do not have an ACHD center nearby, you may need to travel to get recommended care. Many ACHDers use a “team approach.” After an initial consult, the ACHD specialists team with a local cardiologist to provide care. If travel costs are a problem for you, you may be eligible for free air travel and other assistance—for more information, click here. If your insurance is limiting you care choices, please see our suggestions here click here.
Websites: ACHD clinic website links are provided where available. These can be helpful sources of additional information, but keep in mind that websites are a form of advertising. An impressive site may or may not reflect the quality of what is offered.
Phone numbers: You may want to call the ACHD clinic number provided to ask questions about what is offered. In addition, you may want to call other divisions (such as pediatric or adult cardiology) and ask for information about the ACHD clinic.
Note: Participation in the ACHD Clinic Survey Project is open to all interested ACHD Clinics in the United States, Canada, and the United Kingdom. To learn more about the ACHA/ISACCD Clinic Survey Project e-mail Dr. George Warren at ghwarren2@msn.com or ClinicDirectory@achaheart.org.
