Alpha Liver E-Group
Alpha Liver List
Childhood Liver Disease Research and Education Network (ChiLDREN) Natural History Study
Ask most parents of children who have Alpha-1 what they want most, and they answer that they want a cure for Alpha-1. Our entire Alpha-1 community wants a cure, but did you know that you and your Alpha-1 kids can help?
Yes, you and your children can help. Participate in research!
Currently, the Childhood Liver Disease Research and Education Network (ChiLDREN) is conducting the largest natural history study of infants, children, and young adults up to the age of 25, who have SZ or ZZ Alpha-1 Antitrypsin Deficiency and liver involvement. ChiLDREN is a collaborative team of doctors, scientists, nurses, research coordinators, medical facilities, and patient support organizations. One of the primary goals of ChiLDREN is to provide a way for patients to join with doctors and researchers by participating in research studies. The greater the collaboration between doctors and patients/their families, the more we can learn about Alpha-1. This important first step is necessary if we are to find new/ better treatments and potentially a cure.
The Alpha-1 natural history study is aimed at acquiring information and data that will provide a better understanding of Alpha-1. Participants are asked to allow study personnel to obtain information from medical records and an interview, and to collect blood, urine, and tissue samples when clinically indicated, in order to understand the cause of Alpha-1 liver disease and to improve the diagnosis and treatment of children with Alpha-1. All of the information obtained is confidential, and no names or identifying information are used in the study.
There are 16 participating centers throughout the United States/Canada that are working together to improve the lives of children and families dealing with rare liver diseases like Alpha-1. Infants, children, and young adults with Alpha-1, who receive their medical care at one of the participating ChiLDREN centers, may be eligible to enroll in current ChiLDREN studies. Those who receive their medical care at other clinical facilities may also be eligible for ChiLDREN studies, if they are able to visit a ChiLDREN center for an annual visit.
To find out more about participating in the this research study, please contact one of the participating centers to obtain more information. A list of participating centers is available here: http://childrennetwork.org/centerschildren.html
Participating in research is a personal decision. Here are some suggestions for deciding if participating is the right choice for your family or your child(ren):
1) Make an informed decision which matches your family's philosophy and your child's or children's needs.
2) Review the ChiLDREN website for more information: http://childrennetwork.org/
3) Read the ChiLDREN brochure: http://childrennetwork.org/families/children_brochure.pdf
4) Take a look at the study information available at: http://clinicaltrials.gov/ct2/show/NCT00571272?term=NCT00571272&rank=1