Patients can help medical scientists all over the world. Your medical records contain clues that can lead to new treatments. Also biopsies or collected blood and lymphatic fluids can be used for specific studies. And sometimes there are trials for new medicines or therapies which you can join.
Tell your doctor if you are interested to share your data or join studies.
We also encourage all our patients to join the LGDA Registry and the AllStripes platform.
The LGDA Registry for lymphatic malformations is started many years ago and is formally maintained by the LGDA in America. It is not owned by doctors or researchers.
Via AllStripes you can access your medical records. They collect all your records, at no cost, in a secure and private account.
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 Complex Lymphatic Anomalies to find a treatment and a cure.
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 information that identifies you or your family will be labelled with a code number, encrypted, stored in a secure place, and protected with a password. 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 if 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 Complex Lymphatic Anomalies, 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