People diagnosed with Autoimmune or Autoinflammatory diseases that have arthritis as a major clinical component (AiArthritis), often face challenges that lead to delays in diagnosis, misdiagnosis, re-diagnosis and multiple diagnoses. This can cause treatment complications – or “hard-to-treat” disease, resulting in poorer outcomes and inflated long-term healthcare costs.
Some of these diseases, like Adult-Onset Still’s Disease (AOSD), are considered “rare”, while others, like Rheumatoid Arthritis (RA), are considered more common; however, in our internal research, and through continued dialogue with a global patient community, we have identified that many patients do not match the classic disease descriptions as outlined in mainstream publications (“typical” versus “atypical”). Therefore, in addition to delays in detection and diagnosis, we believe it is important to further explore relationships between “rare” versus “common” diseases, as well as “typical” versus “atypical” presentation, to explore how these subsets affect disease progression and outcomes and why some diseases may be harder to treat than others.
This research is the final part of a bigger collaborative project between Purple Playas Foundation, IFAA, and the American Autoimmune Related Disease Association (AARDA), called Knowledge is EmPOWERment. This last initiative is to explore some rare, “atypical”, and hard-to-treat autoimmune and autoinflammatory diseases with arthritis as a major clinical component to identify patterns as to why some diseases are harder to treat than others. Those who do have hard-to-treat disease often experience poorer outcomes, higher healthcare costs, and may exhaust existing treatment options.
The voice of those living with these diseases is POWERful; sharing your experiences will help us develop materials educational materials we hope will aid in early detection, diagnosis, and access to care for the atypical, hard-to-treat population. The results of this research will be used to further our work to advocate in favor of early detection, diagnosis, and access to care.
1. At least 18 years of age.
2. A person OR the parent/guardian of a juvenile person who is currently diagnosed with one or more of the following hard-to-treat autoimmune or autoinflammatory diseases that include arthritis as a major clinical component (AiArthritis). We are focusing on these diseases at this time because they are most closely related in symptom and clinical feature onset, progression, and treatment protocol.Qualifying AiArthritis diseases include:
- Rheumatoid Arthritis (RA)
- Adult Onset Still’s Disease (AOSD)
- Juvenile Idiopathic Arthritis (JIA)
- Systemic Juvenile Idiopathic Arthritis (sJIA)
- HIDS (hyper-IgD syndrome, a mevalonate kinase deficiency)
3. Other co-morbidities, in addition to at least one of the Qualifying AiArthritis diseases, are also permitted.
4. Diagnosis was confirmed by a rheumatologist. We understand you may not have initially been diagnosed by a rheumatologist (for example, you may have been diagnosed by an infectious disease doctor), but may have eventually been referred to see one. Since this study covers such a broad number of people and subcategories, and possible specialists that could be involved, in order to properly measure our response to treatment results, we are going to focus these comparisons on those who eventually saw a rheumatologist.
5. Be able to read and write in English.
6. Global participation welcome.
Exclusions
- Those who do not have a current diagnosis of at least one Qualifying AiArthritis diseases mentioned in the inclusion list.
- Those who never had their diagnosis confirmed by a rheumatologist.
- Those who are not at least 18 years of age.
To participate, click here.