Autoimmune Research Registry (ARNet)
NADF will participate in the Autoimmune Research Registry, ARNet, a network of autoimmune disease advocacy organizations that will foster research into autoimmune adrenal disease’s and related autoimmune conditions. The first goal of ARNet will be to reduce the time it takes to diagnose these diseases.
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 will be supported by grants from the American Autoimmune Related Diseases Association (AARDA), which will allow NADF to participate at no 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.
- 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.
Hydration “Salt Wasters” And Dehydration
Aldosterone is the adrenal cortex hormone the human body uses to regulate sodium (salt) and potassium (a.k.a. electrolytes) and, therefore, blood pressure.
Due to no or very little aldosterone production, people with primary adrenal insufficiency (primary Addison’s disease) and the majority (75%) of those diagnosed with classical congenital adrenal hyperplasia (CAH) are categorized as “salt-wasters”, and must replace this aldosterone hormone orally (with fludrocortisone acetate, a.k.a. Florinef®).
Even with oral replacement, maintaining the optimum levels of this hormone can be a challenge. When these “salt wasters” exert themselves heavily, or spend enough time in hot temperatures, there is a good possibility of their losing too much salt in sweat and urine, putting them at higher then normal risk for dehydration. Therefore, “salt wasters” should be sure to drink enough non-sugar-laden liquids, and supplement with enough salt to alleviate this dangerous situation.
Some good liquid options to consider: water (always the best liquid), seltzer or soda water, tea of any type, fruit juice, milk, broth, etc. (Cold salted liquids are not recommended…too much salt at one time can cause diarrhea.)
Salty food ideas: dill pickles, pretzels, nuts, olives, broth, potato chips, etc.
MAYO Clinic DHEA Study
Dehydroepiandrosterone Replacement Therapy in Hypoadrenal Women:
Protein Anabolism and Skeletal Muscle Function – click to read PDF article
November 2008 – Updated 11/18/2012
|North American Survey (1997)||The first survey of individuals with Addison’s disease residing in North America (1997)|
|DHEA Studies||Research and reports about DHEA (Dehydroepiandrosterone)|
|Juan Miguel’s Triumphant Story||NADF Helping Those in Need in Foreign Countries – Read Juan’s Story
|U.S. Food and Drug
Administration Presentation (PDF)
|U.S. Food and Drug Administration presentation on:
|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|