GENERAL INFORMATION
There are many types of medical research. Some involve taking medications or tests, while others may look at medical records or require a questionnaire. Genetic research usually refers to mapping genes and determining the function of the gene and requires a DNA sample. All types of medical research are regulated by governments and institutions in order to protect the rights of the people participating in research.
Here are some general questions you should ask when you consider taking part in research.
1. What is the purpose of the study?
2. What are the benefits for my participation? The risks?
3. What costs are entailed with the study?
4. What will happen with the results of the study?
In general, research projects must be approved by an Institutional Review Board (IRB). You will be asked to sign an informed consent form which provides you with information about the research project. If you decide not to participate, in a research project, the doctors can not refuse to treat you or your family.
If you are interested in more information about participation in genetic research, consider visiting two Websites with brochures published for the public to learn more. There is a brochure about informed consent at the Genetic Alliance Site. A detailed booklet entitled "Understanding Gene Testing" is published by the National Institutes of Health and other government agencies.
RESEARCH AT HOPKINS
Predictors of ICD Firing in ARVD Patients
Who: People with a definite diagnosis of ARVD and an implantable cardioverter defibrillator
What: This study is trying to learn more about what causes arrhythmias that need treatment with a shock from your ICD. You will be asked to answer some background questions about your diet, exercise and medications. If your ICD delivers a shock, you will be asked to answer additional, more detailed questions about your activities in the days before the shock. In addition, we will request copies of the ICD interrogations in order to learn more about the details of the arrhythmia.
How to Join: Contact the ARVD Clinic Office at 410-502-7161
Principal Investigator: Dr. Hugh Calkins, MD
Professor of Medicine and Pediatrics,
Director of the Arrhythmia Service and Clinical Electrophysiology Laboratory
Johns Hopkins Hospital, Carnegie 592, 600 N. Wolfe St.
Baltimore, Maryland 21287-0409
Phone: 410-955-7405
E-mail: hcalkins@jhmi.edu
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Clinical and Genetic Investigations of Right Ventricular Dysplasia
Who: Children and adults with ARVD
What: Collection of pertinent past medical records and continued collection for 5 years. A blood sample for DNA for genetic mapping of ARVD genes
How to Join: Contact Crystal Tichnell, MGC at 410.502.7161 or ctichnell@jhmi.edu. She will need to send you a consent form, then review the submitted records and make arrangements for obtaining and shipping the blood sample.
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Non-Invasive Cardiac Testing for Patients with Arrhythmogenic Right Ventricular Dysplasia (ARVD)
Who: For all people diagnosed with ARVD
What: We have a research study involving radiology, cardiology and laboratory tests. These tests include:
• CT scan of the heart with contrast
• Signal averaged ECG
• Cardiac MRI (for those without an implantable cardiodefibrillator)
• T wave alternans test
• Blood sample for measures of muscle and cell damage or death
You can choose to have any number of these tests. We do need to have your medical records in order to verify that you have ARVD.
Where: You must travel to Johns Hopkins Hospital in order to participate.
How to Join: Contact Crystal Tichnell, MGC at 410-502-7161 or ctichnell@jhmi.edu.
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Pregnancy in Patients in Arrhythmogenic Right Ventricular
Dysplasia
Who: Adult women diagnosed with ARVD (regardless of pregnancy)
What: Collection of obstetrical and cardiology medical records, completion
of questionnaire describing your pregnancy and family history information
How to Join: Contact Crystal Tichnell, MGC at 410.502.7161 or ctichnell@jhmi.edu.
She will need to send you the consent form, medical records release forms,
and questionnaire.