CARES Foundation does not counsel individual patients either for or against participation in any specific research study.  Prospective volunteers should always carefully review the study’s informed consent documentation and discuss the pros and cons of their participation with trusted advisers, including their health care providers and family members.  For more information on research participation, check out https://www.hhs.gov/ohrp/education-and-outreach/about-research-participation/index.html

1. CAHtalog Registry– a new way to contribute to critical classic congenital adrenal hyperplasia (CAH) research from home. CARES is partnering with Neurocrine Biosciences on the CAHtalog registry – a new type of research study for patients living with classic CAH. PicnicHealth’s research platform will be used to collect your medical records and those of others living with classic CAH. The goal is to understand how CAH affects real people in the real world. By examining and analyzing this “real-world data”, researchers can find answers that can’t be found in clinical trials. Sign up here.
2. Gene Therapy Trial for Adults with Classic CAH is now open for enrollment. Adrenas’ investigational gene therapy approach has the potential to enable a person living with CAH to produce cortisol and aldosterone in response to the body’s rhythms, stress levels, and the demands of daily living. If successful, this may allow people living with CAH to reduce their steroid doses or even eventually allow them to stop taking steroids entirely. The Adrenas investigational gene therapy will be administered in one intravenous (IV) dose. For information, please visit www.cahgenetherapy.com or for questions, please email clinicaltrials@adrenastx.com. Click here for an informative webinar: The Potential of Gene Therapy for CAH. 
3. Diurnal’s  CONNECT study will be run in the US, Japan, Turkey and France and will be enrolling first patients before the end of the year. The study will be a blinded study (i.e patients and their endocrinologists will not know what treatment they are on) and will trial Chronocort against Cortef. Details of the study can be found on the Clinicaltrials.gov website
4. CAH Volunteers Needed for Natural History Study at NIH – patients of all ages with CAH (both classic and nonclassic). For more information, contact the CARES office at 866-227-3737.
5. CAHmelia studies are clinical trials to test tildacerfont in adults with classic CAH. These Spruce Biosciences clinical programs are designed to evaluate the efficacy of tildacerfont, a new type of oral, once-daily investigational treatment – one that is not a steroid – that is currently being tested in adults with classic CAH. By reducing the amount of androgens your body makes, tildacerfont may improve classic CAH symptoms. Visit www.CAHstudy.com to enroll.