Rare Lung Diseases Consortium
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Why is your participation important?

Every patient can play an important part in helping us to find out more about rare lung diseases. One very important way you can help is by joining the Patient Contact Registry, and possibly taking part in a clinical trial.

What is a Contact Registry?

The RLDC Contact Registry is a method by which patients with rare lung diseases can register themselves with the RLDC in order to be contacted in the future about clinical research opportunities and receive updates on the progress of the RLDC research projects. The contact registry is anonymous and free of charge.

You (or your child) are invited to participate in a research project that will develop a nationwide registry for patients. 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.

The Rare Lung Diseases Consortium has been established to collect information and perform research on Alpha-1 Antitrypsin Deficiency (Alpha-1), Lymphangioleiomyomatosis (LAM), Pulmonary Alveolar Proteinosis (PAP), Rare Interstitial Lung Diseases (chILD, IPF, CTILD). In the future, the Consortium hopes to add research studies in other rare lung diseases. Joining the contact registry will help researchers identify and recruit patients who are eligible for participation in future research studies.

Information contained within this registry will be used for recruitment to research studies directed at improving our knowledge and treatment of these rare diseases. The continued efforts of researchers seek 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.

Who Can Join the Contact Registry?

Any patient with a confirmed diagnosis of a rare lung diseases such as alpha-1 antitrypsin deficiency (Alpha-1), Lymphangioleiomyomatosis (LAM), Pulmonary Alveolar Proteinosis (PAP), Rare Interstitial Lung Diseases (chILD, IPF, CTILD) can join the Contact Registry.

How does the Contact Registry Work?

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

Click here to join the Contact Registry!