INSTRUCTIONS:

If you are registering a minor between the ages of 7 and 17 years (or if that person has not reached adult age based on local laws), have him or her read this document and answer any questions he or she may have about entering the registry. The information is written so that the average seven-year-old child can understand. If the child is not able to read, you may read the document to him or her.

MINOR PARTICIPANT ASSENT:

Until you are at least 18 years old your parents (or the adult who takes care of you) must give permission for most everything you do, especially things like doctors giving you medicine or doing tests. They must also give permission to share some kinds of information about you. Today the person who takes care of you has read about a project being done by the Lymphangiomatosis and Gorham’s Disease Alliance (LGDA) and decided it will be safe for you and could be helpful for you and others to share some information about you. The place where your information will be shared is called a patient registry. This note is to tell you what your parents/guardian are going to share, what we do with it, and what we do to keep your information safe.

A patient registry is a place to collect information about you on a computer like your name, age, what kind of doctors you go to, the kind of medicines you take and operations you may have had, and other things about your health. A patient registry sometimes collects information about your parents and your brothers and sisters, aunts, uncles, and grandparents, too. The same kind of information gets collected about a lot of other people, too, and all of it is saved on a special computer where scientists can look at it to see things that they are interested in, like how many people have the same disease, how many are boys or girls, and what kinds of medicines they take.

The scientists are working to learn about diseases some people have and find ways to make the people better. When they find something they think will help, like a new medicine, they need people to try it out. To find the people they want to try out their new medicine, they look on the computer with the patient registry and find some people who they think the medicine will help and ask them (or their mom and dad, if they are kids) if they want to try the new medicine.

But the scientists can’t just call you up and ask if you want to try out their new medicine, because they are not allowed to see the part of the computer that has things like your name and your parents'/guardians' names and the address of the place where you live and your email and phone number. Those things are secret. All of the secret stuff gets turned into a special number. Only a couple of people in charge of the patient registry get to know the special number that goes with your name, address, email, and phone number.

So, if the scientists want to ask your parents/guardian if you want to try their new medicine, they have to give the people in charge of the registry the special number and ask them to match it up with your real name and send your parents/guardian a letter, an email, or call your parents/guardian on the phone and tell your parentsguardian about the scientist and the new medicine. Then your parents/guardian can call the scientists if you want to try the new medicine. You do not have to try the new medicine unless you want to and your parents/guardian say it’s okay.

The people in charge of the registry sometimes share stuff in the registry that isn’t secret so new scientists will get interested in learning about your disease and to help the sick people learn more about it, too. But your name, address, phone number, and email is always secret.

Sometimes your parents/guardian will be asked to update your registry information in the computer. When you reach adult age (18 in most states) you will need to tell us if you want to keep being in the patient registry. You can change your mind and stop being in the registry. All you have to do is have your parents/guardian send us an email.  You can find the email address after you've logged into the registry using your parent's/guardian's username and password.  Select the 'Home' button then 'Contact Us' and you'll see the email address.