If you have Addison’s disease caused by autoimmunity, please complete the ARNet survey at https://www4.gvtsecure.com/arnet/genfunc.exe?NADF. This will only take about 15 minutes and could make a huge difference in future research.
NADF is encouraging you to fill out the information as we hope this can lead to a better understanding of Addison’s, including research on its causes, potential treatments, and perhaps even a cure. If NADF learns you might be eligible candidate for a study, we will contact you with information about the research.
NADF joined the Autoimmune Research Network (ARNet) in hopes that it will boost autoimmunity research, including Addison’s disease.
After you have completed this survey, we will remove your name and other identifying information so the rest of your data (such as your age, location, and your specific symptoms) can be safely used by researchers to see if a person like you would be a good candidate for participation in their research. Then, if you decide to participate, NADF will help you contact the researcher. Researchers are never given your name until you decide to participate in a specific research study. Your anonymized data may also be used by NADF’s for its own research projects.
The first goal of ARNet is to reduce the time it takes to diagnose Addison’s disease. Researchers will be able to use ARNet to find out how many people are qualified to participate in their medical research projects. Note that NADF will not be sharing any of our member data with the researcher. All participation is voluntary.
ARNet is supported by grants from the American Autoimmune Related Diseases Association (AARDA), which allows NADF to participate at minimal cost to our organization or our members. We are grateful to AARDA and the National Coalition of Autoimmune Patient Groups (of which NADF is a member) for providing us with the opportunity to collaborate with other disease advocacy organizations. We believe our understanding of autoimmune conditions such as Addison’s will greatly improve as a result of this effort.
Our Data Use Policy
How does The National Adrenal Diseases Foundation use your data?
- We remove your name, address, email, phone and any other data that can directly identify you.
- We include information that would help determine whether you would be eligible for participation in research, including your age, sex, years with disease, symptoms, etc.
- The information you provide is used to let researchers count our members who might be eligible for consideration in research. For example, if we have 25 members who are eligible for research on Addison’s disease and you agree to participate in ARNet, you would increase that count by 1, so the researcher would get the number 26 instead of 25. It’s that simple.
- If you are eligible for a research study based on the information we have, NADF will contact you and let you know about the researcher and the research.
- Then, and only if YOU decide to contact the researcher, that researcher will collect additional data from you to determine if you are eligible to participate in the research. At no point are you required to provide data you are not comfortable providing. Even if you decide to contact the researcher, you can decide not to provide your data.
NADF may also use your data as part of our work to determine the prevalence of Addison’s disease.
Throughout this process, NADF never gives your data to researchers.
|Survey for Medical Community on Adrenal Insufficiency||NADF with support from Opinion Health, a healthcare research agency based in London, UK, conducted a National Survey on adrenal Insufficiency (AI).|
|Phase 2 Study of Chronocort in the Treatment of Adults With Classic Congenital Adrenal Hyperplasia
||From the National Institutes of Health Clinical Center. A Phase 2 Study of Chronocort, a Modified-Release Formulation of Hydrocortisone, in the Treatment of Adults With Classic Congenital Adrenal Hyperplasia.|
|Clinical Trials referencing “Adrenal”||National Institutes of Health website Information on the various studies being conducted on some aspect of adrenal disease|
|Rare Genetic Steroid Disorders Consortium||The Contact Registry is a secure, computerized database held by the data coordinating center that is a member of this consortium grant. By registering on the Contact Registry, registrants are simply notifying this computerized, private registry of their interest in being contacted about potential research opportunities that are being conducted by the Rare Genetic Steroid Disorders Consortium.|
|Autoimmune Addison Disease||NIH Genetic Home Reference page with information about Autoimmune Addison’s disease.|
|The Role Of The Adrenal Gland In Sepsis And Inflammation (PDF)||From the Conference on the Adrenal Cortex 2014 Chicago, Dr. Stefan R. Bornstein’s presentation is available here.|
|Hydrocortisone Infusion Therapy – clinical trial (PDF)||Continuous Subcutaneous Hydrocortisone Infusion Therapy in Addison’s Disease: A Randomized, Placebo-Controlled Clinical Trial|
|MAYO Clinic DHEA Study||Dehydroepiandrosterone Replacement Therapy in Hypoadrenal Women:
Protein Anabolism and Skeletal Muscle Function