JOINTS Registry - Osteoarthritis Action Alliance (original) (raw)
Journey with Osteoarthritis: Insights on Needs, Treatments, & Symptoms (JOINTS Registry)
Help us create a world where adults are not limited by osteoarthritis (OA). Join the JOINTS Registry to share your experience and opinions!
SIGN UP if you have joint pain or OA
RECEIVE EMAILS about surveys and study opportunities for new OA treatments and interventions
PARTICIPATE in the surveys and studies you choose (and qualify)
Frequently Asked Questions
How does it work?
Currently there is no cure for arthritis. To help find new interventions, treatments, and possibly even a cure, the OA Action Alliance seeks to connect researchers, inventors, and companies with people willing to share their experiences about living with OA.
- The OA Action Alliance will email you regularly with a few survey questions about your OA symptoms, health, and opinions. We may also include survey questions from inventors, companies, healthcare providers, or others who are looking for feedback from adults with OA on products, programs, or resources.
- We will also work with researchers to identify studies that need participants. Then, we will look for Registry members who might be eligible and email them new study opportunities.
- Participation in studies or surveys is always optional. You can choose to skip any surveys or choose not to participate in studies, and you can drop out from the Registry at any time.
- Your personal information will always remain confidential/anonymous.
- Joining the JOINTS Registry is easy and free.
Who can take part?
The personal and economic burden of OA is significant, and the effects are felt by people with OA, their families, employers, and communities. We are inviting individuals with OA 18 years of age or older to join our JOINTS Registry to help develop new resources for the prevention and management of OA.
What is involved?
Complete an online survey that takes about 10 minutes
What is the goal of this study?
The goal of this study is to build a national research registry of individuals with or at risk of osteoarthritis (OA). This registry will be available for researchers and graduate students, corporate organizations, Osteoarthritis Action Alliance (OAAA) partner organizations, and other appropriate entities to collect observational, de-identified data (e.g., demographics, disease impact, social determinants of health, quality of life) directly from people with OA and their caregivers. The registry aims to improve access and understanding of individuals’ experiences with OA for the benefit of OA prevention and management.
Why participate?
Sharing your experience with OA will lead to better knowledge about the disease, guide the development of innovative evidence-based solutions, and help improve the joint health of future generations.
By participating in the JOINTS Registry, you will:
- Share your unique, individual experience with OA;
- Demonstrate to physicians, researchers, regulators, insurers, and others the seriousness of the disease;
- Identify where individuals with OA and their caregivers need more information and pinpoint what additional resources would be helpful;
- Help the OA Action Alliance improve lives by elevating OA as a national health priority;
- Receive updates from the JOINTS Registry about its progress and impact.
How is my data kept private and confidential?
The JOINTS Registry takes your privacy seriously.
- The information you provide (including your name, contact details, and survey responses) will be stored in the JOINTS Registry database on a secure UNC computer server.
- Only approved study personnel from UNC (like research assistants, coordinators, and investigators) can access the database.
- De-identified data and reports from the database may be compiled and shared with outside entities. However, your name and contact information will not be shared.
- Your identity will not be revealed in any datasets, study reports, or publications.
- The JOINTS Registry has been approved by an ethics committee. All research study opportunities sent to JOINTS Registry participants are approved by an ethics committee.
- We will never sell any information you provide to us.
Leigh F. Callahan, PhD
As the director of our registry, I’d like to share with you the importance of your participation. Your involvement is key to driving forward the research that will deepen our understanding of OA and lead to more effective treatments. By joining us, you’ll be kept up-to-date with the latest developments in the field, ensuring you have the most current information at your fingertips to manage your condition.
Your journey with OA is unique, and by tracking it through our registry, you’ll be able to manage your health more effectively and have informed discussions with your healthcare providers. You’ll also become part of a larger community, connecting with others who understand exactly what you’re going through, providing mutual support and encouragement.
Our work also focuses on identifying early intervention strategies that could improve your quality of life. Moreover, your participation helps us raise awareness about OA and advocate for more resources and attention to be directed towards this condition.
Joining our registry isn’t just about contributing data – it’s about being part of a collective effort to enhance care and support for those affected by OA. It’s a step towards a future where we can all live better with this condition. Your role in this is invaluable, and together, we can truly make a difference!
Leigh F. Callahan, PhD Director of the OA Action Alliance