The ALD Connect Patient Portal
The ALD Connect Patient Portal is NOW AVAILABLE!
What is ALD Connect?
ALD Connect was founded in January 2013 by a dedicated group of clinicians, scientists, patients, and patient advocates. The organization arose out of a collective recognition that only a collaborative network would allow clinical care to keep pace with the many exciting scientific advances in the study of ALD/AMN. ALD Connect represents seven clinical centers across North America and one in the Netherlands. We plan to incorporate many more ALD/AMN clinicians, scientists, and academic centers both nationally and internationally in the years ahead. The mission of ALD Connect is to improve health outcomes for individuals with adrenoleukodystrophy (ALD) by raising disease awareness, empowering patients, and accelerating the translation of scientific advances into better clinical care.
At ALD Connect, we have listened to you. We designed a Patient Portal where you can participate in a research study to create a global database of adrenoleukodystrophy (ALD) patients, their symptoms, and their priorities. Our Patient Portal is now available, where you can register yourself and your family. On the Portal, you can answer survey questions about your health and help direct ALD research, so that together we can be one step closer to our ultimate goal: a cure. Click here to sign up
Who can participate in the portal?
Have you been diagnosed with adrenoleukodystrophy (ALD) or adrenomyeloneuropathy (AMN)? Are you a parent of a child with ALD, a carrier of ALD, or even a caregiver of someone with ALD? If so, we want you to join the Portal!
How will my participation in the portal help me?
In the Portal, you will be able to track your abilities and health over time. When we conduct research, the Portal will offer you the opportunity to learn about these studies first-hand and give you the ability to participate. Your voice will be heard. With the Patient Portal, you will advance ALD research in the areas that matter most to you.
What will I find in the portal?
As part of this study, you will find two simple tools:
- What Matters to Me?
This questionnaire allows us to find out what health topic is of highest importance to you.
This rating system allows you to rate your daily abilities on a scale and see how you are doing over time.
Look out for additional questionnaires coming soon!
How do I start?
Signing up is quick and easy! First, create an account with an e-mail address and password. Next, review consent form and provide consent to participate in this research study. You can then decide which surveys you want to complete-each should only take a few minutes. We hope that you will continue to track your health over time in the Portal, but how much and how often you participate is up to you.
How does my participation help ALD Connect?
ALD Connect wants to help advance research to benefit the patient community. By filling out our surveys, you help physicians and scientists truly understand where the real daily problems are and what to focus on.
No Back Row Seats!
We want everyone to participate in the portal. Only you know how ALD has affected you and your loved ones. Please share this experience with us!
Click here to sign up
If you have any questions, comments, or concerns about the information presented to you, please contact ALD Connect at admin [at_symbol] aldconnect.org or 001-617-643-4218.
Last modified | 2017-12-12