Take Action - Join the Contact Registry

You (or your child) are invited to participate in a research project that will develop a nation-wide Patient Contact Registry for patients with genetic causes of intrahepatic cholestasis. This project is part of the Rare Disease Clinical Research Center Network, a network of clinical centers, each involved in research of specific rare disorders. This network is funded by the National Institutes of Health.

Available for Download: CLiC Patient Contact Registry Brochure [.pdf]

What is a Contact Registry?

The CLiC Patient Contact Registry is a method by which patients (and their families) with rare liver diseases can register themselves to be contacted in the future about clinical research opportunities. When you do this, you can also receive updates on the progress of CLiC research projects. The Patient Contact Registry is completely private and free of charge. Registering for more information does not commit you to joining any studies. For more information on the CLiC Contact Registry, see " How does the Contact Registry work? " below.

Why was CLiC established?

CLiC was established to collect information and perform research on the following five genetic causes of intrahepatic cholestasis and to train the next generation of clinical researchers. We cannot do this without the participation of our patients. The five liver diseases to be studied in CLiC are:

• Alagille syndrome (AGS)
• alpha-1-antitrypsin (a-1AT) deficiency
• bile acid synthesis and metabolism defects
• mitochondrial hepatopathies
• progressive familial intrahepatic cholestasis (PFIC)

Why is your participation important?

The continued efforts of researchers may someday save and improve the quality of life for all who are suffering from these rare diseases. Their work is one part of this important effort. The other part is you.

Through research we can:

• Make advances in medicine
• Discover new treatments
• Prolong healthy life
• Lessen the burden of illness
• Find cures

Volunteers make it possible for researchers to find new treatments, create new studies, and work for the improvement of all our lives. By joining our contact registry, you are contributing not only to our research but to the future of all who have these rare diseases.

The Registry was created to provide information to patients (or their parents) about clinical research studies performed on Cholestatic Liver Diseases. Joining the Registry will help researchers identify and recruit patients who are eligible for participation in future research studies, including research to find new treatments, better markers of diseases, and the causes of these diseases.

Information contained within this Contact Registry will be used for recruitment in research studies directed at improving our knowledge and treatment of these rare diseases. The continued efforts of research aim to improve the quality of life for all who are suffering from these rare diseases. The work of the researchers cannot occur without the partnership with patients. Patients who participate in research make it possible for researchers to understand the development of the diseases and to find new treatments. By joining our registry, you will be contributing to the research of the Rare Disease Clinical Research Network.

Who can join the Registry?

Any patient under the age of 25 years with a confirmed or suspected diagnosis of one of the five CLiC diseases below can join the CLiC Patient Contact Registry. (Because CLiC is focused on studying children, the patient must be under age 25 at the time of enrollment in the appropriate study.)

• Alagille syndrome (AGS)
• alpha-1-antitrypsin (a-1AT) deficiency
• bile acid synthesis and metabolism defects
• mitochondrial hepatopathies
• progressive familial intrahepatic cholestasis (PFIC)

How does the Contact Registry work?

After you have read and agreed to the Authorization, the Registry form will appear on your screen. This forms asks you for information such as your (or your child's) name, address, birth date, place of birth, email address or items related to your (or your child's) disorders.

Once you have entered and submitted this information online, the data will be stored in a secure, computerized database. No personal identifying information (such as your name, address, telephone number) will be given to anyone without your expressed approval.

Who do I call if I have more questions about the Patient Contact Registry?

If you would like to talk with someone about the Registry, you can email the Data Technology and Coordinating Center. Your questions will be kept private.

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