CLINICAL RESEARCH STUDIES
In order for significant advances to be achieved in pediatric cardiomyopathy research, there needs to be major improvements in several areas. Most notable is increased Federal and private funding as well as heightened interest and involvement from leading scientists and physicians. Equally as important, more diagnosed families need to come forward to participate in research studies. It should be highlighted that advances in childhood cancer therapies have been dramatically aided by the willingness of parents and healthcare workers to enroll patients in research studies.
Families can ask their pediatric cardiologist or geneticist to recommend specific research studies relevant to their child's case. Information about ongoing clinical studies can be found on these National Institute of Health sponsored sites:
These search sites provide detailed information on clinical trials currently recruiting patients. Details include the purpose, procedure, research phase, eligibility and contact information. This is not a complete listing of all research done on the disease because research studies not listed with the N.I.H. may still be in the preliminary stages and predominately funded by other private sources. Additional listings of U.S. laboratories conducting research on cardiomyopathy can be found at Gene Reviews.
Before deciding to participate in research, a good article to read is: "Medical Decision Making: Informed Consent in Pediatric Research". The National Heart, Lung and Blood Institute also has an informative website, "Children and Clinical Studies," that provides detailed information for parents and healthcare providers.