Register for a Cure
The DADA2 Foundation is founded on a core belief: the patient’s voice matter to fully
understanding DADA2. 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.
That is why we are launching the first-ever DADA2 Patient Registry – and we need every patient
involved! While the process is lengthy, we are here to help you every step of the way.
Make an account on our secure Registry created with tested software trusted by the world’s leading medical institutions.
Add Your Medical Info
We want to know about the medical care you have received, and also how you feel on a daily basis. What helps, what hurts, what feels good. All of your info will be stored in your own record, but your name will not be associated with it to those studying the data.
The data submitted by every patient and their physicians is now available to researchers who have shown an interest in finding treatments and a cure for DADA2. Together, we will built the picture of the disease.
Why Join the Patient Registry?
Without the patient voice, we cannot create a comprehensive view of DADA2! The DADA2 Patient Registry 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. 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. Please click to sign up below!
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.
- Doctors and researchers can securely study the disease.
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.
You are also welcome to download this one-pager to share with patients. It includes a QR code for patients to scan that will take them to the patient portion of this website.
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 pedigrees
- 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, various translational biometric methods can be applied. Data requisitions can be customized to your analysis and stratification needs. Contact the DADA2 Foundation Patient Registry Committee for more information by clicking below.