The Lymphatic Malformation Alliance (LMA), in partnership with NORD®, has launched the International Patient Registry for Lymphatic Malformations. The registry creates a platform for patients around the world to strengthen their voices and share information about isolated lymphatic malformations (LMs) and complex lymphatic anomalies (CLAs), rare disorders of the lymphatic system that can cause swelling, pain, impaired mobility, and other complications. LMs and CLAs currently have no cure. Designed with input from scientists and patients, this global resource will provide data for researchers to better understand LMs and CLAs, advance drug development, identify potential treatment options, and ultimately improve patient care.
“For rare and highly variable conditions like lymphatic malformations and complex lymphatic anomalies, every patient experience adds to our understanding,” said Dr. Mike Kelly, Executive Director of the Lymphatic Malformation Alliance. “By bringing these experiences together in one global registry, we can begin to identify patterns, answer important questions about how these conditions affect patients over time, and give researchers the data they need to move the field forward. The strength of this registry will come from the participation of our community.”
For more information, visit LMRegistry.iamrare.org.
Frequently Asked Questions
What is a patient registry?
A patient registry is a secure place where people share information about their health and experiences with a specific condition.
By joining, you help doctors and researchers better understand lymphatic malformations and improve care for the community.
What if I was part of the previous LM registry?
Welcome back, and thank you for your continued participation! If you were enrolled in the previous LM registry (known as the LGDA Patient Registry), you should receive an email from IAMRARE® with a link to activate your account on the new registry platform.
Activating your account through this link connects it to your previous registry account. This allows your surveys to be prefilled with your past answers, which saves you time and makes the process easier. The new registry also includes a number of additional questions, so you’ll still need to answer those, along with reviewing and updating any past responses that have changed.
Please use the activation link rather than creating a new account. If your email address is already associated with a previous registry account, you may not be able to create a new account with it.
If you did not receive an activation link, please check your spam or junk folder first. If you still can’t find it, email registry@lmalliance.org and our team will help you get set up.
Why should I participate?
Your experience matters.
By sharing your (or your child’s or loved one’s) experiences, you can help:
- Improve understanding of lymphatic malformations
- Support research for better treatments
- Improve quality of life for patients and families
- Make sure the LM community is heard
How will the registry help the LM community?
By collecting information from patients and families around the world, the registry helps researchers better understand how lymphatic malformations develop, how treatments affect patients, and where gaps in care exist. This information can help guide research, improve care standards, and strengthen advocacy efforts for the LM community.
Who can join the registry?
Patients of any age, anywhere in the world, who have been diagnosed with a lymphatic malformation (LM) can participate. Parents or legal guardians may register on behalf of their child. Caregivers can also participate and share their experiences.
Do I need a confirmed diagnosis to join?
You can still participate even if your diagnosis is not fully confirmed. You can answer questions based on what you know and update your information over time.
Why does the Registry include all Lymphatic Malformations?
Lymphatic malformations exist on a spectrum and may share similar genetics, biology, symptoms, and treatment approaches. Including a broad range of lymphatic malformations allows researchers to better identify patterns, compare experiences across conditions, and improve understanding of these diseases as a whole.
What information will I be asked to share?
For patients, the registry gathers both medical and quality of life information. You will complete surveys about your:
- Basic background information (like age and geographic location)
- Diagnosis
- Medical History
- Disease Information and symptoms
- Treatment and Procedure History
- Quality of Life and Impact of Care
You may skip any questions you do not feel comfortable answering. Caregiver participants will also complete surveys specific to their experiences.
Is my information safe?
Yes. Protecting your information is the registry's highest priority. The registry is hosted on the National Organization for Rare Disorders (NORD®) IAMRARE® platform, which uses secure, password-protected systems designed to protect participant information. You may visit iamrare.org for more information on the IAMRARE® platform.
Who can access my data?
Your information is not publicly available and is not shared with researchers automatically. Only authorized Lymphatic Malformation Alliance registry staff and NORD personnel can access your identifiable information when needed to support and maintain the registry. Any request to use registry data for research must be reviewed and approved before access is granted.
In most cases, researchers receive de-identified data, which means information such as your name and other direct identifiers have been removed. If a study requires identifiable information, it will only be shared when necessary, with appropriate approvals and strict confidentiality protections in place.
Our goal is to advance research while protecting the privacy and trust of every participant and family who contributes to the registry.
Will my doctor see my information?
No. Your registry information is not automatically shared with your doctor. However, you may choose to share your registry report with your healthcare team if you wish.
Who makes sure the registry is ethical?
The registry is reviewed by an Institutional Review Board (IRB), an independent group that protects research participants. This helps ensure your rights, safety, and privacy are always protected.
The registry is also overseen by a committee of LM doctors, patients, and researchers called the Registry Advisory Council. They make sure that all registry-related decisions are in the best interest of the LM community as a whole.
Do I have to stay in the registry?
No. Participation is completely voluntary. You can leave at any time, for any reason.
Who runs the registry?
The registry is run by the Lymphatic Malformation Alliance in partnership with National Organization for Rare Disorders (NORD). Both organizations are dedicated to supporting patients with rare diseases and advancing research.
How long will it take to complete the registry surveys?
The initial surveys typically take about 30–45 minutes to complete. You may save your progress and return at any time. Follow-up surveys are shorter and will generally be sent once per year.
How will my information be used?
Your information will be combined with others (without identifying you) to:
- Support research
- Help develop new treatments
- Improve care
- Strengthen advocacy
Will I learn about new research opportunities?
Yes. If you choose, you may opt in to be contacted about future research opportunities, including studies or clinical trials that may be relevant to you.
Will the Registry be available in multiple languages?
The Registry will initially launch in English. The IAMRARE platform displays buttons, such as 'Submit' and other messages in several languages; however, the informed consents and surveys will initially be available only in English.
The registry will soon provide fully translated versions of all surveys and materials. Spanish will be the first additional language available, with more languages to follow.
What if I don’t remember everything about my medical history?
That’s okay. Just answer what you can and skip anything you’re unsure about. If you’ve previously completed registry surveys, some of your past responses may be available to help guide you when answering certain questions. You can also ask a family member if you want, but it’s not required.
How often will I need to update my information?
You will usually only be asked to update your information once per year. You are also welcome to log in and update your information at any time if something changes.
Do I need medical records to participate?
No. You do not need to upload or provide medical records to participate in the registry. While there are opportunities to upload medical records to the registry, the surveys are mostly based on your own knowledge and experience with your condition.
Will I receive any results or updates from the registry?
Yes. We plan to share updates about research findings, registry progress, and community impact as they become available.
Caregiver FAQs
(Note that all policies and protections offered to patient participants are also afforded to those who participate as a caregiver)
Why should Caregivers participate in the registry?
Caregivers have an important perspective. Caregivers often coordinate appointments, manage medications, advocate within healthcare systems, provide emotional support, and handle daily medical needs that may not otherwise be captured in medical records. Their experiences help researchers understand the real-world impact that lymphatic malformations have on a patient and their family, beyond clinical symptoms alone. The information you share will help support:
- future research
- improved care recommendations
- caregiver support resources
- advocacy efforts
- insurance and policy discussions
- future clinical trial design
How private are my caregiver responses?
Caregiver information is kept private and protected. Your responses are securely connected to your registry account so that researchers can study caregiver experiences and outcomes over time.
The participant who invited you to join the registry as their caregiver will never be able to see your survey responses. Likewise, you will never be able to see their survey responses. Each person’s responses remain private, even though the two accounts are securely linked for research purposes.
When registry data is used for research, it will be shared in an aggregated or deidentified form, meaning information that directly identifies you is removed. This allows researchers to better understand both patient and caregiver experiences while protecting each person’s privacy.
Who can see my caregiver responses? Can the patient in my life see my answers?
Caregiver responses are kept confidential within the registry system and will not be shared directly with the patient, family members, or other participants. Information is stored securely and protected through strict privacy and research safeguards.
While the registry must collect certain identifying information in accordance with official research requirements, this information is used only for verification and registry administration purposes and is not publicly shared or visible to other participants.
Approved researchers may review registry data for research purposes, but identifying information is protected according to the registry’s privacy and data-sharing policies.
Can I skip questions that feel too personal?
Yes. Participation is voluntary, and you may skip questions you do not wish to answer.
Can I be honest about the difficult parts of caregiving?
Many caregivers feel uncomfortable discussing stress, exhaustion, financial strain, or emotional challenges because they deeply love the person they care for. However, understanding both the positive and negative impacts on the caregiver is an important part of improving support systems, healthcare resources, and the quality of life for families affected by lymphatic malformations. Your identifying information will remain protected and confidential, and your responses will only be used for approved research and other official registry purposes.
Why is caregiver research often missing in rare diseases?
Historically, rare disease research has focused mainly on medical symptoms and treatments. Caregiver experiences are harder to measure and are often underrepresented in formal research. Gaining a better understanding of the caregiver experience can really help us see a clearer, more complete picture of how the disease affects LM patients and their families.
