AutoInflammatory Disease Alliance Registry (AIDA)
The AutoInflammatory Disease Alliance (AIDA) Registry is an international project gathering important health information about a group of rare conditions called autoinflammatory diseases. These diseases cause the body's immune system to overreact, leading to repeated flare-ups of inflammation without obvious cause like infection. Because these conditions are rare, it's hard for doctors to learn enough about them. This secure online registry helps doctors share information about symptoms, genetic factors, and treatments from many patients. This will improve our understanding of these diseases, help with earlier diagnosis, and lead to better care and awareness for people living with them, both now and in the future.
At a glance
What is this study about?
The AIDA Registry is a big, international project designed to help us learn more about a group of rare health problems called autoinflammatory diseases. Think of your immune system as your body's protector; in autoinflammatory conditions, this system sometimes overreacts or gets confused, causing inflammation in your body even when there's no infection to fight. This can lead to repeated and sometimes painful flare-ups of symptoms.
Examples of these conditions include diseases like Still's Disease, Behçet's Disease, and PFAPA syndrome. Because each of these conditions is quite rare, individual doctors might only see a few patients with them. This makes it challenging to gather enough information to truly understand how these diseases work, what causes them, and which treatments are most effective for different people.
That's where the AIDA Registry comes in. It's a secure online database where doctors from around the world can safely share details about their patients' health, including their symptoms, any genetic test results, and how they respond to different treatments. By bringing all this information together, the registry creates a much bigger picture, helping researchers and doctors to spot patterns, understand long-term effects, and ultimately improve diagnosis and care for everyone living with these conditions.
Key takeaways
- This is a registry, not a treatment study.
- It collects existing health information about rare inflammatory diseases.
- Your data will be secure and kept private.
- The goal is to improve understanding and care for these conditions.
- Participation involves no extra clinic visits or procedures.
- You can withdraw at any time.
Who may be eligible?
To be able to join this registry, you would need to have received a diagnosis for one of the specific autoinflammatory conditions or related diseases that the registry is studying. This includes conditions like certain hereditary autoinflammatory diseases, Still's disease, Behçet's disease, PFAPA syndrome, Schnitzler's syndrome, VEXAS syndrome, certain types of eye inflammation (uveitis or scleritis), specific forms of arthritis (spondyloarthritis), or Castleman disease.
Your doctor would confirm your diagnosis meets the specific medical criteria for one of these conditions. The registry is open to people of all ages and genders, from children to adults. The most important requirement is that you, or your legal representative if you are under 16, must give your permission (informed consent) to share your health information for the registry. If you don't provide this consent, you can't be included.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Do I have a diagnosed autoinflammatory condition or a similar disease like Still's, Behçet's, or PFAPA?
- Has my doctor confirmed my diagnosis based on specific medical guidelines?
- Am I willing to have my existing health information shared confidentially for research?
- Do I understand that this involves no new treatments or tests for me?
What does participation involve?
Joining the AIDA Registry involves your doctor sharing your existing health information securely online. You won't need to visit a research clinic, take any new medications, or undergo any additional tests specifically for this registry. There are no extra doctor's appointments or follow-up visits beyond your usual medical care. The information shared will be things like your symptoms, diagnosis, any genetic results, and how your current treatments are working. This is an ongoing project, so your health details might be updated over time by your doctors.
Potential risks and benefits
Locations (112)
- University Algiers 1Verified postcodeAlgiers, Algeria· Recruiting
- Université M'Hamed Bougara de BoumerdasVerified postcodeBoumerdas, Algeria· Recruiting
- Flinders UniversityVerified postcodeAdelaide, Australia· Recruiting
- University of AdelaideVerified postcodeAdelaide, Australia· Recruiting
- Antwerp University HospitalVerified postcodeAntwerp, Belgium· Recruiting
- Hospital das Clinicas da Faculdade de Medicina HCFMUSPVerified postcodeSão Paulo, Brazil· Recruiting
- Peking University People's HospitalVerified postcodeBeijing, China· Recruiting
- The First Affiliated Hospital of Chongqing Medical UniversityVerified postcodeChongqing, China· Recruiting
- Universidad del Rosario - Escuela de Medicina Y Ciencias de La SaludVerified postcodeBogotá, Colombia· Recruiting
- Mansoura University, Faculty of MedicineVerified postcodeAl Mansurah, Egypt· Recruiting
- Al-Azhar UniversityVerified postcodeCairo, Egypt· Recruiting
- Cairo UniversityVerified postcodeCairo, Egypt· Recruiting
Common questions
What is an autoinflammatory disease?
It's a condition where your body's immune system causes inflammation repeatedly, usually without an outside trigger like an infection.
Will I have to take new medicines?
No, this is a registry, not a drug trial. You won't be given any new treatments or asked to change your current medication.
Will my personal details be safe?
Yes, the registry uses a very secure online system called REDCap, designed to protect your information and privacy.
How will my information be used?
It will be used, along with information from many other patients, to help doctors understand these rare diseases better, improve diagnoses, and find more effective treatments.
Can I leave the registry if I change my mind?
Yes, you have the right to withdraw your consent at any time without it affecting your medical care.
How to find out more
Luca Cantarini, MD,PhD
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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