What is CreakyJointsPRO?
CreakyJointsPRO is a Patient-Reported Outcomes (PRO) initiative to help patients and their caregivers make better-informed decisions about their arthritis care. It is a community of patients built around safely sharing health information and experiences in order to help members track and compare health and treatment information with other patients. Information provided by the community will also help clinicians and researchers better understand and respond to the needs of the arthritis community.
What is a Patient Reported Outcome?
A Patient-Reported Outcome, or PRO, is a survey, questionnaire, or any other type of health-related information that is completed by a patient (not by a physician). PROs can be used to assist in health research to determine the effectiveness of a treatment or medication, to assess quality of life issues, or to determine the quality of a person’s healthcare.
Who can be a CreakyJointsPRO member?
Anyone living with arthritis. CreakyJointsPRO represents the entire spectrum of the arthritis community: all ages, all parts of the world, all types of arthritis.
I was just diagnosed, can I be a CreakyJointsPRO member?
Yes. People with any stage of arthritis can join CreakyJointsPRO.
I haven’t been very good about monitoring my arthritis, can I be a CreakyJointsPRO member?
Yes. CreakyJointsPRO is meant to make it easier for you to monitor your arthritis and become more aware of your treatment progress. We may also offer you the opportunity to wear a passive activity monitor from time to time to help assist you in tracking your treatment.
What will I have to do as a CreakyJointsPRO member?
You’ll be asked to provide information about yourself and your arthritis via online questionnaires.
How often will I be expected to report?
Report as often as you like, but you will be expected to report on a somewhat regular basis. Set a schedule that works for you: daily, weekly, once a month, or after every visit with your doctor. Or you may want to just check in with us as often as you can. The more you participate, the more CJPoints you earn to increase your chances of winning cool prizes in raffles exclusively for CJPRO members.
How do I report?
On your computer via the CJPRO section of the CreakyJoints.org website. We are in the process of creating a CreakyJointsPRO app that will allow you to report via your smartphone.
What will you ask me?
You will be asked to provide basic information about yourself and your arthritis. From time to time you might be asked to answer specific questions about your activities, your arthritis and how you manage it, and your medical care.
Why do you need to know where I live?
Where you live affects your lifestyle: People in cities have different habits from those in suburban or rural areas. Where you live can also influence the treatment you receive, your insurance coverage, and even the progress of your arthritis.
Where will my information go?
CreakyJointsPRO information will be collected in a completely secured computer database. Data will be accessible to health researchers in an anonymous, de-identified form only. You will never be able to be identified from any of the accessible information.
Who will see my information?
Physicians, research scientists, and professors from world-renowned institutions who are working on studies related to arthritis. Community members will also be able to see others’ information, but only in an aggregated form (and never identifiable) with other CJPRO members’ information. This is so you can see how our community is doing as a whole and learn the best treatment options shared by others. We will also allow you to select specifically who you do and do not share your information with.
Will I meet with researchers or be examined in person?
No. However, you may choose to share information from a visit to your own physician or other healthcare providers.
Will I be asked to participate in drug tests or trials?
You may be offered the opportunity to participate in tests or trials on occasion.
Will I be asked to do anything other than answer questions?
Possibly. We might ask some participants in CreakyJointsPRO to wear wristwatch-style passive data collection devices that monitor physical activity such as heart rate.
How do you protect my privacy?
All information is sent to us in an encrypted format. We will never sell your information to third parties. We will not release any personally identifying data to anyone, ever. We will never collect your personal financial data. You will never be identified by name in the CreakyJointsPRO database; your information will be categorized only by standard demographic characteristics such as age, gender, and type of condition.
How is CreakyJointsPRO funded?
CreakyJoints is part of the Global Healthy Living Foundation, a 501(c)(3) non-profit advocacy organization, based in New York. Primary funding for CreakyJointsPRO comes from a grant from the Patient-Centered Outcomes Research Institute (PCORI) [http://www.pcori.org/]. We are honored to manage and administer the arthritis component of PCORI’s national database to support patient-centered research.
Will you ask me for money?
Will you compensate me for my information?
Possibly. We expect that certain research projects will offer participants some compensation for their participation, and many others may allow you to earn points toward cool CreakyJoints materials. As a CreakyJointsPRO member, you will have first access to participating in these studies.
What will I gain by being a CreakyJointsPRO?
You will be able to track your health and treatment progress over time. You will be able to see how you’re doing compared to the rest of the CJPRO community and learn about the most up-to-date treatments for arthritis. You will be able to bring your PRO information to your physician so they can be more informed about how you’re doing and make better treatment decisions centered around your needs as a result. We hope that you’ll also gain a sense of well-being from contributing to the pool of knowledge available to patients, caregivers and researchers seeking better treatment for arthritis.
Why do you need me?
CreakyJointsPRO needs everyone. The larger the database, the more accurately it represents the arthritis community. You’ve heard it before, but we’ll say it again: Your voice counts!
How can you prove my voice counts?
The information you provide will raise awareness among scientists, researchers and physicians about issues facing the community—things they might not know about (or know enough about). The issues you raise about your arthritis will help call attention to areas that need to be studied and addressed. .
How do I know I’ll be heard?
As a CreakyJointsPRO member you’ll have the opportunity to ask questions and raise concerns that will be heard by physicians and other health providers, researchers and policy makers. CreakyJointsPRO is a resource that has never existed before. It’s a bridge connecting knowledge about arthritis with the people who need it most. That includes you.
How can I become a CreakyJointsPRO member?
I have more questions. How can I reach you?