This page provides information for individuals and families with dilated cardiomyopathy (DCM) that is known or suspected to be idiopathic and/or familial.
Background on DCM– addresses frequently asked questions about cardiomyopathy
The Genetics of DCM – provides essential genetic information and general comments on genetic testing
Screening recommendations – reviews key information for you and your family
Participation – invites you and your family to join this research effort
We hope you find this information useful. If you have questions that have not been addressed here but you would like to have added, please contact us. We are updating and improving this website continuously.
PLEASE NOTE: This information is provided as a service of our FDC research program. It is NOT intended to substitute for consultation with a licensed health care professional, nor does it address all physical and emotional issues that may arise with an FDC diagnosis.
(pdf file of this page)
Background on Dilated Cardiomyopathy, IDC and FDC
What is dilated cardiomyopathy? Cardiomyopathy means heart muscle disease ('cardio' = heart, 'myo' = muscle, and 'pathy' = disease). Many forms of cardiomyopathy exist, but by far the most common category is dilated (= enlarged) cardiomyopathy. The cardiac dilation, or heart enlargement, occurs because the heart muscle becomes weakened. The heart is a pump, and its job is to pump blood to the body. When the heart enlarges as a result of muscle weakening, the pumping action of the heart becomes weaker also. As a result, less blood than normal may be pumped to the body, especially during vigorous activity.
What is the most common cause of dilated cardiomyopathy? The most common cause (65-70%) of dilated cardiomyopathy (DCM) in the US results from coronary heart disease, usually from a previous myocardial infarction ("heart attack"). A myocardial infarction occurs when the heart does not receive adequate blood and oxygen, usually when a cholesterol plaque ruptures in a coronary (heart) artery, blocking the flow of blood to the heart muscle. This condition is called ischemia. Prolonged ischemia results in the death of part of the heart muscle. When a large part of the heart muscle dies from a heart attack, in some patients the remaining heart muscle weakens and dilates over time. This type of cardiomyopathy is called ischemic cardiomyopathy (we do not study this).
What is idiopathic dilated cardiomyopathy? The next most common type of DCM is called idiopathic dilated cardiomyopathy, or IDC. Idiopathic means “cause is unknown.” Thus, for a patient to have a formal diagnosis of IDC, other potential causes of heart muscle disease should have been excluded, as much as it is possible to do so. This could include coronary heart disease. Other potential, less common causes of dilated cardiomyopathy include certain drugs such as Adriamycin used to treat cancers, problems with heart valves, and other cardiac problems. In addition, some cases of DCM have traditionally been attributed to other environmental exposures, such as excessive alcohol use and viral infections.
What is Familial Dilated Cardiomyopathy (FDC)? Idiopathic dilated cardiomyopathy that is inherited, or familial, is called familial dilated cardiomyopathy, or FDC. For many years, the familial form of IDC was not well recognized. Even until the early 1990's, it was thought only about 1-2% of cases of IDC ran in families. In 1992, however, a U.S. study demonstrated that 20% of patients with IDC had first-degree family members (parents, siblings, or children) with a similar disease. Data published in 1998 from two European studies confirmed that 35-50% of cases of IDC were likely to be FDC, that is, inherited or familial. Thus, we now know that there are many families in which familial dilated cardiomyopathy occurs.
How is FDC diagnosed? A diagnosis of FDC can be made when IDC is identified in two or more members of the same family.
Why did it take so long to discover that IDC was familial? Part of the reason is that family members may have very different symptoms from one another, and they may develop these symptoms at different ages. Also, in some cases IDC causes affected individuals to die suddenly, and in years past this may have been attributed to a “heart attack” rather than to IDC. Finally, the right types of clinical studies were not done to carefully examine this issue.
What is sporadic IDC? Sporadic IDC refers to disese occurring in only one family member, after screening has ruled out the presence of DCM in first degree relatives (parents, children, siblings). However, the heart changes associated with DCM can be present in the absence of symptoms. Therefore, if cardiac screening has not been performed in first degree relatives, some individuals may be inaccurately described as having no family history of DCM. Therefore, in the absence of cardiac screening information, a more appropriate term to refer to individuals with no reported family history is 'apparently sporadic IDC.'
Why is this group studying IDC? Our group chose this area of research following the 1992 report (that 20% of patients with IDC had FDC) in an effort to identify the genes that cause DCM when mutations are present, to better understand how the disease progresses, and to eventually devise new therapies for cardiomyopathy and heart failure. It is our sincere hope that the information gained from studying individuals and families with IDC will lead to earlier diagnosis and better treatments for DCM, other forms of cardiomyopathy, and heart failure in general. For more detailed information on our research efforts, please see the "Our History" or "Our Publications" pages.
What is heart failure? Heart failure, frequently called congestive heart failure (CHF), is a common symptom of DCM. CHF describes a clinical syndrome in which the heart is not able to pump adequate amounts of blood to the body. Heart failure is not the heart "stopping suddenly" as the words imply. The most common symptoms of heart failure include shortness of breath with activity or exertion, edema (fluid collection) in the feet and legs, difficulty sleeping flat in bed (needing to prop oneself up on several pillows), and at times awakening in the middle of the night short of breath and needing to sit up to the edge of the bed for several minutes to catch one's breath.
Does IDC always lead to heart failure? IDC does not always lead to heart failure, although in their late stages, most people with the disease begin to have some symptoms of heart failure.
What other symptoms does IDC cause? In addition to heart failure symptoms described above, IDC can also cause abnormal heart rhythm disturbances, or arrhythmias. In some families, arrhythmias are the first sign of IDC.
The normal heart regularly beats between 60-100 times per minute. In IDC/FDC, irregular and/or fast heart rhythms can occur. Some such rhythms cause palpitations. Palpitations are the sense of one's heart "skipping a beat," or beating too fast, or beating very hard, and can last from seconds to minutes, and even occasionally hours. With rapid heart rates, individuals may feel dizzy or lightheaded, or experience shortness of breath with minimal activity.
A more severe symptom is called syncope, which is the medical term for complete loss of consciousness. Other common terms used for syncope include "a blackout spell" or "a fainting spell.” Because syncope may be caused by more dangerous arrhythmias, it always requires immediate medical attention.
Syncope which results from an arrhythmia that is accompanied by full cardiac arrest, also known as full cardiopulmonary arrest (loss of heart rate, blood pressure and breathing) is called sudden death, or sudden cardiac death. If someone suffers an episode of sudden cardiac death, the patient must undergo successful cardiopulmonary resuscitation (CPR) to survive, although in rare cases it is possible that the lethal arrhythmia may stop by itself and the patient may regain normal a normal heart rate, blood pressure and breathing. If a patient survives an episode of sudden cardiac death, emergency medical treatment is needed to evaluate, treat and prevent future episodes from occurring.
The Genetics of Dilated Cardiomyopathy
How is IDC inherited? FDC has been shown to result from changes (mutations) in the genetic code of several genes whose role is key for normal heart muscle function. In most cases (90% of the time), FDC appears to be inherited as an autosomal dominant trait. Autosomal dominant means that every child of an individual who carries the mutation has a 50% chance of inheriting the mutation, and this mutation is sufficient to cause disease. However, because genetic DCM can also show reduced penetrance, not all individuals who carry a mutation will have signs or symptoms of the disease. Our recent data suggests that like FDC, apparently non-familial (sporadic) IDC (a known history of IDC found in only one person in a family), also has a genetic basis. We propose that IDC, whether familial or sporadic, lies on a continuum of disease resulting from different degrees of genetic influence. See our newsletter articles on the genetic causes and inheritance of FDC and the genetics of sporadic IDC.
Will every family member carrying a disease causing mutation have the same symptoms and presentation of DCM? No, the symptoms and presentation can vary considerably, even among members of the same family who have the same gene mutation. Also, the severity of the disease may vary quite a bit. For example, one gene carrier may live into old age with only a minor heart rhythm problem that hardly bothers them. Another gene carrier in the same family might have a sudden, severe onset of the disease at a young age, with episodes of syncope and/or cardiopulmonary arrest, or may require heart transplant.
In addition, some individuals carry a mutation that can cause disease but have no, or unnoticeable, cardiac symptoms. These "unaffected" carriers still have a 50/50 chance of passing on the altered gene to their offspring, who again could fall anywhere in the spectrum. Unfortunately, right now there is no way of knowing how, when or with which symptoms the disease will present, or begin, in a given family member. Therefore, all first degree relatives (parents, children, siblings) of individuals with IDC should be screened. See your doctor if you are concerned that you are experiencing any of the symptoms of cardiomyopathy or heart failure that have been mentioned here.
Are there features of IDC that suggest a mutation in one gene vs another? In general, no, the features of IDC from different genes in most cases have considerable overlap with one another for most patients and families, even though approximately 30 different genes have been suggested to cause genetic DCM (in the For Professionals pages of this website, a compendium of the different genes that have been shown to cause FDC are provided in a GeneTable). The possible exception to this is the disease gene lamin A/C, which may cause from 5-10% of FDC. Lamin A/C cardiomyopathy commonly presents with prominent conduction system disease (disorders of the heart’s electrical conduction system which causes a variety of arrhythmias), sometimes prior to the onset of dilated cardiomyopathy and heart failure.
If a person with IDC has no other affected family member, can it still be genetic? Evidence from our research suggests that IDC could be genetic even in the absence of a family history. Our preliminary data suggest that the likelihood of IDC being genetic is similar among individuals with a positive family history and those without a familiy history of IDC. This is an important area of study for our group.
Can a patient with IDC undergo genetic testing? Guidelines for the genetic evaluation of individuals with DCM have been developed: Genetic Evaluation of Cardiomyopathy: A Heart Failure Society of America Practice Guideline. These include recommendations for clinical genetic testing. However, because of the many disease genes implicated in DCM, and those yet to be identified, no comprehensive genetic test is available. Genetic testing including panels of a subset of the known genes are available at a few specialized laboratories. See our newsletter article on the medical guidelines for the genetic evaluation of DCM for a summary of these guidelines. We also recommend our newsletter article on research and clinical genetic testing options for more in-depth discussion about genetic testing. Also, ask your doctor about genetic testing for IDC.
Screening Recommendations
If someone in my family has IDC, should I have any cardiovascular clinical testing or screening done? According to the Heart Failure Society of America (HFSA) guidelines (Genetic Evaluation of Cardiomyopathy: A Heart Failure Society of America Practice Guideline), it is recommended that family members of patients with idiopathic dilated cardiomyopathy (IDC) undergo clinical screening. This recommendation is based upon the knowledge that (1) FDC is diagnosed in 35-50% of patients with IDC, and (2) effective treatment for IDC is available. This recommendation was initially published in September 1999 in a major US cardiology journal (specific reference can be found here), and a subsequent review of the literature reiterated this recommendation (specific reference can be found here). More recently, in March of 2009, the HFSA, with consensus from experts in the field, published the first official medical guidelines for the genetic evaluation of cardiomyopathy, including dilated cardiomyopathy (specific reference can be found here).
What types of cardiac tests are recommended for screening? Comprehensive screening includes (1) a history and physical examination by a doctor or other trained health care provider, (2) an electrocardiogram (EKG) and (3) an echocardiogram. These tests look for signs of the disease that may or may not be accompanied by symptoms.
Who should be screened in my family if I have a diagnosis of IDC? According to the HFSA guidelines, screening is recommended for parents, children, and siblings (i.e. first-degree relatives) of individuals with IDC. That is, if an individual is newly diagnosed with idiopathic dilated cardiomyopathy, we recommend screening of their first-degree relatives, regardless of whether those relatives are experiencing any symptoms.
If a diagnosis of FDC has been made in part of my family, should the entire family be screened? The current HFSA guidelines recommend stepwise screening.
What is stepwise screening? Stepwise screening is progressive evaluation of the first degree relatives of those shown to be affected. As stated above, to establish a diagnosis of FDC, at least two family members must have IDC. We recommend stepwise screening of all first-degree relatives of these family members.
For example, if two brothers are diagnosed with IDC, the diagnosis of FDC can be established by definition (see "How is FDC Diagnosed?" above). We would therefore recommend screening of the first-degree relatives of the two affected brothers. The brothers' first-degree relatives include their parents, their other brothers and sisters (siblings), and their children. Screening of these first-degree relatives is step one in stepwise screening. To take this example to step two, if the brothers’ father is found to be affected, then we would recommend that the first-degree relatives of the affected father also be screened. The first-degree relatives of the father include his parents (the paternal grandparents of the first two brothers diagnosed), his brothers and sisters (the paternal aunts and uncles of the first two brothers diagnosed), and his children (who have already been screened). This would be step two in stepwise screening. To continue the example, if in screening the first-degree relatives of the father, FDC is discovered in his sister, we would recommend screening of her (the father's sister's) first-degree relatives. This would be the step three in a stepwise screening of this family. Stepwise screening is recommended until all first-degree relatives of those affected with IDC have been screened.
What are the recommendations for screening of more distantly related family members? At this time there are no formal recommendations for screening of more distantly related individuals (for example, second or third degree relatives – aunts, uncles, cousins, grandparents/grandchildren) of those who are affected. However, it is important to note that it is always appropriate to perform screening in any individual with cardiovascular symptoms who has a family member with IDC. In some families with particularly aggressive disease, it may be appropriate to screen these more distant relatives regardless of whether or not they have symptoms.
If my screening tests are all normal, when, if ever, do I need to be rescreened? A single normal screening can be reassuring; however, it does not completely eliminate the possibility that disease could develop in the future. Therefore, the HFSA guidelines recommend that first-degree relatives have an EKG and echocardiogram every 3-5 years. Between screenings, it is important to be aware of one's cardiovascular health, and if anyone experiences cardiac symptoms (i.e. shortness of breath, dizziness, fainting, etc.), they should tell their doctor.
What are the recommendations for children at risk for IDC? IDC is usually diagnosed during the adult years (20's to 60's), and thus it is unlikely that younger children will have any symptoms or detectable abnormalities at cardiac evaluation, even if they carry a mutation that can cause DCM.
In large families that have been selected for study for research purposes, our group has conducted evaluations of all available family members, including babies and children of all ages. However, the utility of screening babies and younger children without symptoms other than for research purposes is unclear for two reasons. First, the chance is low that any cardiovascular abnormalities will be detected, and second, a child's heart normally is growing and enlarging rapidly, and consequently it is more difficult to categorize a child's heart size as "abnormal." Regardless, the HFSA guidelines recommend that children who are first-degree relatives of an affected individual undergo a complete cardiovascular screening and, if normal, a repeat EKG and echocardiogram every 3-5 years. Of course, with any abnormal cardiac signs or symptoms, children (like adults) should undergo a complete cardiovascular exam and evaluation immediately.
Is there treatment for DCM? Yes, DCM can be treated. Medical therapies such as angiotensin-converting enzyme (ACE) inhibitors and beta-blockers are very effective in improving heart function and even reducing heart size in most individuals. It is our hope that our project will lead to improved treatment for individuals with DCM.
Does DCM affect pregnancy? The relationship between pregnancy and DCM is not clear. Normal pregnancy demands extra work from the heart and may worsen an underlying weakness in the heart. Therefore, pregnant women with a family history of IDC (FDC) should be followed closely by both their obstetrician and cardiologist even if they have had previously healthy pregnancies. Women with IDC or FDC who are planning a family should consult a cardiologist to discuss the risks during and after pregnancy. Women with FDC should be alert to cardiac symptoms during pregnancy, and if symptoms occur, they should seek medical help immediately. Finally, women with IDC or FDC may also wish to speak with a genetic counselor regarding genetic testing and reproductive options.
If my family has FDC, should I tell my doctor about my family history? We recommend that you tell your primary care doctor and cardiologist (if you have one) about your family history of FDC. This information can make a difference in your medical care, lifestyle recommendations, and the amount of surveillance recommended for you. Your physician may find the "For Professionals" section of this website helpful in answering many of his or her own questions about FDC. If you have specific questions about your genetic risks that your physician is unable to answer, he/she should consider referring you to a genetic counseling professional. You may find a genetics provider in your area by searching the Resource Link on the home page of the the National Society of Genetic Counselors or the American Board of Medical Genetics. You are also welcome to contact us with questions.
If I have IDC, should I discuss it with my family? Because IDC, especially if familial, is known to have a genetic basis, sharing information about your health with your family members can help them to make important decisions about their own health. Knowing that dilated cardiomyopathy runs in the family can help your relatives to look out for and detect signs of the disease earlier than they might otherwise. This is important, as early detection of an enlarged heart or an arrhythmia can help people who have this disease live longer, healthier lives. For this reason, many people want to know if they or their loved ones are affected. Please also remember, however, that not everyone feels comfortable sharing personal health information, even with family members.
I would like to talk to someone about my specific risk for DCM - who should I contact? There is no substitute for one-on-one consultation with a knowledgeable health care provider. If you have a family history of FDC, after consultation with your primary care doctor or cardiologist you may be interested in discussing your personal risks with a genetic counselor or geneticist. You may find a genetics provider in your area by searching the Resource Link on the home page of the National Society of Genetic Counselors or the American Board of Medical Genetics . You are also welcome to contact us with questions.You are also welcome to contact us with your questions.
What can I do now that will be helpful to myself and my family later? Keep good records of your own and your family members' medical care. Hold onto your own and other family members’ medical records and death certificates, which may prove valuable in constructing your family history. If possible, get involved in a research project that may help speed the identification of the genes involved in DCM and lead to improved treatments.
What can I do to help FDC research? If you have IDC (regardless of family history), you can make an important contribution to research. Please review the page on Participation in our research project. We would like to hear from you (see "Contact Us"). The clues to discovering the genetic basis and eventually, better treatments, for the disease lie in individuals and families with IDC. We need your help in order to make progress.
Options for Participation
There are two main categories of participants in our research project: (1) those who participate in the genetic study only (individuals, small families, some large families), and (2) those who undergo full family screening (very large families). Option 1, which can be done by mail or in person, is explained below:
Genetic Study. This type of participation can be done completely via telephone and mail. A diagnosis of idiopathic dilated cardiomyopathy (DCM of unknown cause) must be confirmed by medical records in at least one living person in the family. Family members are encouraged to pursue cardiac screening.
What does participation in the genetic study involve?
- Contact with a Research Coordinator from the FDC Project. The Research Coordinator will help explain the details of the study to you. She or he will also take a complete family history, asking you questions about your own health and your family members’ health. She or he will also help you decide if it is the right time for you and/or your family to participate. You can contact a Research Coordinator at 877-800-3430 or contact us .
- The contribution of a blood sample (via mail) from at least one person in the family who has IDC, and any other willing family members. Usually, after speaking with you on the phone a Research Assistant from our project will mail you a blood kit and the forms you need to fill out, including a consent form. For individuals who go to the doctor regularly, we usually recommend that you take the blood kit to your next appointment and have the blood drawn along with your usual labs. Usually your doctor’s office can then mail the blood to us (via Fed Ex) in the materials we provide. For individuals who do not have blood drawn regularly, the cost of a blood draw can be covered by FDC research funds. Shipping costs are covered by these funds as well. In other words, there should be no cost to you or your physician for you to enroll in our study.
- Participants are also asked to release their medical records to us from their physician(s). Usually, this is done by signing a medical record release form that allows us to communicate directly with the physician’s office. We do this to reduce the amount of work for the participant; however, some people prefer to obtain copies of their records on their own (or already have copies) and mail them to us. We always attempt to gather medical records on any family members who may have IDC and are willing to participate. We also attempt to obtain death certificates on those family members who may have died as a result of IDC or whose cause of death was unknown.
What happens to my blood sample? Your blood sample is sent overnight to our lab. We use the blood to prepare DNA (genetic material), which is examined for changes in genes that may cause DCM. Additional information regarding the genes that cause DCM can be found in our newsletters.
Will you provide me with genetic test results? At this time, no. Research laboratories are prohibited from releasing research genetic test results to research participants, unless they have complied with a law passed by Congress in 1988 entitled the “Clinical Laboratories Improvement Act,” or CLIA. CLIA guidelines enforce sample processing and labeling guidelines to prevent sample mix-ups and errors that occur much more frequently in non-CLIA-certified labs (such as research labs) than in formally CLIA-certified diagnostic labs. It also regulates the quality of testing, and ensures that appropriate safeguards are used to assure reliable, reproducible and high quality test results. It is therefore considered unethical to release genetic results that could have important clinical consequences for individuals from non-CLIA-certified laboratories, because they have not met these high standards to ensure accuracy. Not withstanding these important CLIA issues, when we discover genetic information about a family that we feel may have important implications for the health of family members and future generations, we do inform the family of this knowledge and discuss options with them, even if our laboratory may not be able to provide CLIA-approved testing for that gene. For example, family members can pursue confirmatory genetic testing of our research results for a fee through a diagnostic (CLIA-certified) laboratory. Additional background information and further explanation can be found in our newsletter article “Genetic Test Results” in Volume II, Issue 3 of the FDC Beat.
What about confidentiality - who will have access to the information we collect? All of the information collected is completely confidential and will not be released outside of our research group without your written consent. We do not share your information with anyone (even your family members, unless you are a minor and your parent signed your consent form) unless you request us to do so. If you would like us to share any information with your health care provider, we would need your specific written consent to do so. We are also willing to assist your physician with background knowledge about FDC to enhance his or her understanding of these results, if so requested. Again, your written consent is always required to release your information.
What if I am interested in participating, but my other family members are not? We encounter this situation frequently. Of course, it is always ideal to have as many family members and spouses involved as possible, especially those who have IDC. This is because in order to confirm the diagnosis of FDC in a family, we need to have medical records on at least two individuals confirming that they each have IDC. We also use this information to better understand any genetic findings from our study. However, even if only one or two people in a family are willing to participate in the study, we are often still able to include the interested individuals.
Are there any benefits to me for participating? All study participants will receive the triannual mailing of the FDC Research Group newsletter, "FDC Beat," which updates participants on our progress and contains educational information on FDC. Participants may also opt not to receive the newsletter, or to download it from the website rather than receive it in the mail.
It is important to note that by participating you are contributing to our understanding of DCM and are furthering our scientific knowledge of this condition. We hope that the information learned from this study will enable the development of clearer guidelines and better medicines for the treatment of individuals and families with DCM.
If you are interested in participating, or would like more information, please call us at our toll-free number (877-800-3430) or use the "Contact Us" page to email us and let us know how to get in touch with you.
Why do we do screening? The more clinical information we have from one family, the better idea we have of the presentation and behavior of this disease. For example, screening may help to determine the most common types of symptoms, cardiac tests abnormalities, age of onset, course, and outcome of the disease in a family. In addition, having more family members screened can increase the likelihood of identifying an altered gene in that particular family. This is because we are able compare the DNA of various family members in an effort to narrow down the region that might contain the disease gene.
Cardiac evaluation of all study participants is a very important
component of our research study. This includes family
members who do not have any symptoms of heart disease
but do have a first degree relative (parent, sibling, child) in
our study with IDC. Ideally, individuals will have insurance
coverage for this screening and can do so through their
primary care physician’s or a cardiologist’s office. However,
we recognize that this is not always possible for a
myriad of reasons.
Therefore, we are able to offer a cardiac evaluation for
research purposes through the General Clinical Research
Center (GCRC) at the University of Miami. This center is
staffed by trained health care professionals. If any of the
tests are abnormal, we will provide you with this information
so that you may seek appropriate medical follow-up.
We can give you a copy of your research screening report.
For FDC Research Project participants, cardiovascular
screening at the UM GCRC is free of charge. Although
travel to Miami is not provided, the GCRC welcomes local
and out-of-state participants.
To schedule an appointment or learn more about the
GCRC, please contact us toll free at 1-877-800-3430.
A map to the GCRC at the University of Miami Miller School of Medicine can be downloaded.
If you are screened as part of our research project, what happens to the test results? Our research team carefully reviews the echocardiogram and EKG results and will provide you with the findings, however, it can take months to review all of the data. However, we notify all subjects (or parents of minors) of echocardiogram, ECG, and physical exam results in writing. (Please see "Will you provide me with genetic test results?" for information on genetic results).
What do the test results indicate? If your screening tests are all normal, it means that you have no current evidence for DCM. If any of your screening tests are abnormal or a cause for concern, we will inform you of this and may give you specific recommendations for further medical care from your personal physician. This may include recommendations for further testing and/or treatment.
What about confidentiality - who will know about your test results? All of the information collected is completely confidential and will not be released without written consent from you. We do not share your information with anyone (even your family members, unless you are a minor and your parent signed your consent form) unless you request us to do so. If you would like us to share your screening results with your health care provider, we will gladly provide your physician with copies of the screening results. We are also willing to assist your physician with background knowledge about FDC to enhance his or her understanding of these results, if so requested. Again, your written consent is always required to release your information.
If my screening results are normal, does it mean that I don't have and will never get DCM? Not necessarily. Unfortunately, normal test results at a single screening do not eliminate the possibility that you might develop DCM in the future. This is because the chance of developing the symptoms and signs of DCM increases with age. If one of your family members is affected with DCM, especially if that individual is a parent, child, or brother or sister (first-degree relative), your risk for developing DCM is higher than it would be if you were more distantly related.
Are there any benefits to me for participating? All study participants will receive the triannual mailing of the FDC Research Group newsletter, "FDC Beat," which updates participants on our progress and contains educational information on FDC. Participants may also opt not to receive the newsletter, or to download it from the website rather than receive it in the mail.
It is also important to note too, that by participating you are contributing to our understanding of the genetic causes of DCM and are furthering our scientific knowledge of this condition. We hope that the information learned from this study will enable the development of clearer guidelines and better medicines and interventions for the treatment of individuals and families with DCM. Of course, we may also discover the genetic basis of your dilated cardiomyopathy.
If you are interested in participating, or would like more information, please call us at our toll-free number (877-800-3430) or use the "Contact Us" page to email us and let us know how to get in touch with you. Thank you!
