Will I get paid to participate in ALD Connect?
We cannot pay you for participating in ALD Connect. However, at some future date, you could be paid if you are invited to join a research study.
Will I receive new treatments?
We hope the data we collect will lead to more effective treatments, including treatments designed to prevent or improve nerve damage. As new treatments develop, your doctor, therapist, or other clinician will be able to determine if they are appropriate for you.
Can I refer others to ALD Connect?
Yes. Please tell friends and family members who suffer from adrenoleukodystrophy (ALD) about ALD Connect. Our goal is to bring together more than 2,000 people so that we can transform the way we understand and treat adrenoleukodystrophy.
Can I participate in ALD Connect if I am asymptomatic?
Absolutely. We want to get a real cross section of our community. If you carry the gene defect responsible for ALD, we invite you to join ALD Connect—whether you receive traditional treatments, alternative therapies, or no treatment at all.
What do I have to do to join ALD Connect?
Joining ALD Connect is easy. All you have to do is sign up with your email address and answer a few questions about yourself. A couple of these questions ask about your experience with adrenoleukodystrophy. Other questions ask about who you are–for example, what part of the country you are from and how old you are. The questions should take you about five minutes to complete.
Why do I have to give you my email address?
We ask for your email address the first time you log in to ALD Connect so we can be sure that you are a real person rather than a computer or someone using a made-up name. When we receive your email address, we will email you a personalized link to the registration page so you can register as a member.
How will the information I give you be used?
The information that you give us is to help us better understand your experience of living with adrenoleukodystrophy so that we can identify and develop better treatments for this condition. For example, we may discover that 100 ALD Connect members feel better when they monitor their adrenal function with a particular phone application. We could then share this information with other members.
Who will see the information I give you?
You are the only person who will see your information and know that it is yours. Researchers and clinicians may see your information, but they will only know that it is associated with a certain unique identifier or a string of letters and numbers.
How can I be sure that unauthorized people won’t be able to see my information?
All information you share with us will be securely stored in a database behind Massachusetts General Hospital’s firewall. All systems are regularly scanned and monitored to prevent unauthorized access.
How can I be sure that my information will be kept private?
We take your privacy very seriously. When you join ALD Connect, you will be asked to generate a coded identifying number (Global Unique Patient Identifier, or GUID). Any information you share with us will be associated with this GUID. Your name will not be stored anywhere, and your GUID cannot be linked to you. Although this system cannot guarantee anonymity, it will make it very difficult for anyone to connect your name to anything you choose to tell us about yourself.
I don’t like research studies and don’t want to be part of one. Why should I join?
ALD Connect is not an ordinary research study—it is a network of people with the ALD gene mutation who are committed to finding better treatments and ultimately, a cure. If you join, you will be able to share your experiences with other people who struggle with this condition. You will be able to join forums where you can ask questions and get answers from doctors and other clinicians. You will be able to get feedback on how you are doing right now and over time. While there will be opportunities to join research studies, there is absolutely no requirement that you do so.
What is a GUID?
Our world is numbered. Books have ISBNs and products have barcodes. Cars have VIN’s even people have social security numbers. Numbers help us reference items unambiguously. “John Smith” may be many people, but Social Security Number 123-45-6789 refers to one person exactly. A GUID (globally unique identifier) is a version of this type of ID number.
Your GUID is created on a secure website by a specialized computer program that uses 12 pieces of information about you (e.g., first and last name, gender, birthday). The website and computer program used to create the GUID do not store these pieces of personal information, but if the same information is entered again in the future, the program will return the same GUID every time. Once generated, this GUID will be used to uniquely identify you. This is how data from this study might be linked to data from another study you participate in that uses the GUID. The GUID and any identifiable information will be removed from your record before your data are shared.
I am worried about my privacy. Can this GUID be used maliciously to learn personal details about me or other members of my family?
The GUID is simply a means of identifying the data related to an individual. The system does not store any personal information you enter.
Why do we use the GUID?
The GUID, by virtue of being a unique identifier, ensures that each person’s information is only captured and counted once. It also allows you to modify or add information over time without causing any redundancy or confusion. You may be asked to join ALD Connect by your doctor, your Facebook friend, or another family member. The GUID system ensures that there is no duplication. Otherwise this could distort data and we could draw inaccurate conclusions about ALD or AMN.
It sounds like a good and secure idea, but I am still not so sure. Who can I talk to who either can answer my questions or has a GUID themselves?
Please contact a member of the research team at email@example.com or 617-643-4218.
For a technical description of ALD Connect’s privacy and security system, please click here.