If they prefer direct contact, they would be requested to provide contact information and notify their relatives that they would be approached by a CTC if the proband preferred to personally contact relatives, the CTC would provide the relevant letters to the proband and follow up to ensure that the relatives had been informed ( Figure). To address ethical concerns related to direct contact, probands could be asked which method they prefer. 4 In addition to providing letters to the proband, a trained cascade testing coordinator (CTC) could contact relatives (with the proband’s consent), deliver information to relatives about FH, and follow up to ensure that the relatives have been informed. Dedicated coordinators increased participation of at-risk relatives in cascade testing for FH in the United Kingdom and The Netherlands. 3ĭirect contact by the HCP team may not be feasible because of competing demands, constrained resources, and a lack of awareness and knowledge about the need for cascade testing. However, in The Netherlands cascade testing program, 90% of surveyed participant relatives were satisfied with direct contact. 2 One concern is that relatives may react with surprise and anxiety on receiving medical information. Probands generally welcome assistance from the HCP team to contact relatives, and relatives are more likely to follow recommendations from HCPs. Under HIPAA (Health Insurance Portability and Accountability Act), HCPs can contact relatives directly with the proband’s authorization or by contacting a relative’s provider. Participation in cascade testing for FH could be increased by relieving probands of the burden and anxiety of contacting relatives. Probands may be reluctant to contact relatives because of feelings of guilt for having a genetic disorder, communication between the proband and relatives may be limited because of strained relationships, and relatives may not follow through on recommended testing. Customer Service and Ordering Information.Stroke: Vascular and Interventional Neurology.Journal of the American Heart Association (JAHA).Circ: Cardiovascular Quality & Outcomes.Arteriosclerosis, Thrombosis, and Vascular Biology (ATVB).If you use this eHealthMe study on publication, please acknowledge it with a citation: study title, URL, accessed date. The use of the eHealthMe site and its content is at your own risk. Every effort has been made to ensure that all information is accurate, up-to-date, and complete, but no guarantee is made to that effect. Different individuals may respond to medication in different ways. Our phase IV clinical studies alone cannot establish cause-effect relationship. WARNING: Please DO NOT STOP MEDICATIONS without first consulting a physician since doing so could be hazardous to your health.ĭISCLAIMER: All material available on is for informational purposes only, and is not a substitute for medical advice, diagnosis, or treatment provided by a qualified healthcare provider. Our analysis results are available to researchers, health care professionals, patients ( testimonials), and software developers ( open API). Results of our real-world drug study have been referenced on 600+ medical publications, including The Lancet, Mayo Clinic Proceedings, and Nature. We study millions of patients and 5,000 more each day. With medical big data and proven AI algorithms, eHealthMe provides a platform for everyone to run phase IV clinical trials.
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