Patients: Add Your Voice to DADA2
The DADA2 Foundation is founded on a core belief: the patient’s voice matters to fully
understanding DADA2. That is why we are launching the world's first-ever DADA2 Patient Registry and Natural History Study.
When we combine clinical data with the everyday experiences of patients living with the disease – which vary widely - we can get a more complete picture of how the disease works.
When the Registry launches, all patients will be able to:
Sign Up
Make an account on our secure Registry, created with tested software trusted by the world’s leading medical institutions.
Add Your Experience
Tell us about your medical care and your daily life with DADA2. Your info is stored securely, only accessible by approved researchers, and will not identify your name.
Add to the Community
Info from every DADA2 patient now creates a more complete picture for physicians and scientists to study, identify effective treatment for all, and find a cure.
Patients
Why Join the DADA2 Patient Registry?
Without the patient voice, we cannot create a comprehensive view of DADA2! The DADA2 Patient Registry and Natural History Study asks questions about your experience living with DADA2 symptoms, so we can collect data from all our patients anonymously in one secure place. By grouping all our DADA2 patient medical data together, we may see larger patterns emerge, like a common symptom we didn’t previously recognize as part of the disease. Physicians and researchers can also start to identify similarities between DADA2 and other diseases or point to existing treatments that may benefit our patients. One day, pharmaceutical companies may offer clinical drug trials to certain eligible Registry participants to develop new treatments. All of this may be a future possibility if each of us is willing to do our part to help today. Remember, as a patient participant:
- The Registry will separate your name from your data and will keep your information safe.
- Patients and their caregivers provide the answers to the questions, in addition to medical records you provide from your doctors and specialists.
- Physicians and researchers can securely study the disease.
We're ready to hear from you.
Clinicians
Ask Your Patients To Register Today
The DADA2 Patient Registry is the best way for you and your patients to improve the future outcome of DADA2. We have developed an international database to securely capture de-identified health information, reported by patients and caregivers, and sourced from the medical record.
You’ll find that adding your patients to the DADA2 Registry may immediately expand your clinical research power. With increasing enrollment, emerging trends may inform new studies or drive the significance of your small cohort data. Doctors and clinical researchers may contact the DADA2 Foundation Patient Registry Committee for more information about data requisition.
Let us help you enroll your patients.
Researchers
What Registry Data Can Do For You
The DADA2 Patient Registry is designed to capture clinical record data in parallel with patient-reported outcomes. Our instruments survey:
- Medical data charting the natural history of the disease
- Genetic and diagnostic testing
- Family history with pedigree
- Longitudinal data on patient-reported signs and symptoms
- PROMIS quality of life data
By housing DADA2 data in a secure REDCap platform, trusted by world class medical institutions and developed at Vanderbilt University Medical Center in Nashville, Tenn., U.S.A., various translational biometric methods can be applied. Data requisitions can be customized to an analysis and stratification needs. You can also email us at info@dada2.org to discuss your needs. Or, sign up for the latest updates below.