Join the PARTNERS Network
Be a PARTNERS participant
Through PARTNERS, patient families will finally have the opportunity to share their opinions on what they feel is important in caring for their children. Patients will be directly involved in making decisions about research priorities and designing research studies. Many patients may feel they are not qualified to make these decisions. However, every patient family is an expert in caring for their child. They know how their children feel and what is important to them—a vital point of view in prioritizing and designing studies that will answer questions the patient needs to know to care for their children. Patient representatives will have a voice in every stage of research—from asking the research questions to ranking them in order of importance, from designing the study to enrollment strategies, and finally to sharing the results with all patients in easy to understand language. You can participate in PARTNERS by joining the Research.forMe Lupus Registry.
Be a PARTNERS volunteer
PARTNERS also looks for a diverse group of volunteers who have a connection to childhood lupus. This includes diversity in gender, race, culture/heritage, age, language, socioeconomic background, family structure and sexual orientation. We wish to have families with a range of views and resources participate.
Examples of volunteer opportunities include, but are not limited to, completing surveys, participating in workgroups and committees, and developing and reviewing PARTNERS materials.
Why should I participate in research?
Many patients do not understand what it means to participate in research. You are an integral part of the process. Answering a survey on how you feel or what is important can be examples of participating in research.
Other examples include sharing your health care data in an identity-protected way, suggesting research topics, helping to design studies, and helping to raise awareness of studies and their results. There are many ways to participate in research and the most important aspect is that your voice is heard!
Parents and patients were asked “What is one word that comes to mind when you hear the word “research”? The larger the word, the more times it was mentioned. Over 25% of parents replied with the word “hope”.
This is a powerful message as to the importance of research to those dealing with these diseases on a daily basis.