International LGDA Registry for lymphatic malformations
When you register as a patient in the International LGDA Registry for Lymphatic Malformations you are helping researchers worldwide unlock the mysteries of lymphangiomatosis and Gorham’s disease to find a treatment and a cure.
The International LGDA Registry for Lymphatic Malformations is a place where medical information, family history, and other related information from patients with lymphangiomatosis, Gorham’s disease, and other lymphatic and osteolytic bone diseases is collected and stored for medical research. Information provided by patients will be used for medical research and clinical trials to better understand these diseases and to develop new treatments. The registry also helps scientists to locate people to participate in research studies. It is hoped that the information gathered in the registry will lead to better diagnosis and treatment of these diseases resulting in a better quality of life for those suffering with lymphangiomatosis, Gorham’s disease, and other lymphatic and bone diseases.
If you decide to participate in the registry, you will be asked to provide medical information on your disease and diagnosis. You also will be asked some general questions to help us learn if, for example, you have or are interested in participating in any clinical trials and about the impact of your disease on you and your family. The goal of the registry is to share detailed medical and other information with scientists and other researchers, while still protecting your privacy. To protect your privacy your name, address and other information that identifies you or your family will be labeled with a code number, encrypted, stored in a secure place, and protected with a password. This process of hiding your information from researchers is called “de-identifying” because all personal identifiers have been removed. Your identifiable information will not be shared with anyone outside the registry.
If, based on the information you enter into the registry, you might be eligible for a study or a researcher wants to contact you, he or she can only do so through the LGDA Registry. The LGDA Registry then will contact you but the researcher will not contact you directly. If you decide to participate in the researcher’s study, you may contact them to find out more. This protects your privacy.
Things to know about the LGDA Registry:
- It is simple to join.
- There is no cost to join; the registry is supported by the LGDA.
- Your privacy will be guarded by encrypting your information and not sharing your name, address, phone number, or any other information that may be used to identify you or your family with other outside of the LGDA.
- You can help others and yourself by joining the registry and entering your information, which will help to better understand lymphangiomatosis and Gorham’s disease, as well as a number of other lymphatic and bone diseases.
- Joining the registry is an excellent way to receive notices about patient educational conferences and opportunities to participate in research, although this information is made available on our website, social networks, and newsletters so you don’t have to be a registry member to get it.
- Participation in the registry is voluntary.
- You do not have to participate in the registry to be informed about or to participate in research studies or clinical trials.
- You can change your mind and withdraw from the registry at any time without any explanation.
- We do ask that you update your profile regularly.