NAAF Patient-Centered Research
Leading the Way to a Treatment or Cure!
For over 30 years NAAF has been the leading force behind alopecia areata research to find safe, effective, durable treatments and a cure. As advancements rapidly progress along with recent discoveries, we hope to build a stronger patient-centered research community to prioritize our research agenda and direct treatment efforts toward the most desired end results.
Now more than ever, we need to increase community involvement in meaningful and ongoing dialogue in an effort to build bridges of understanding between patients with alopecia areata, researchers who study the disease, and the biopharmaceutical companies and clinicians who design and deliver treatments. We want to increase the number of successful ongoing research studies for the benefit of patients with alopecia areata. To accomplish this we need patient involvement, and for that we need you.
When we talk about “involvement” we mean getting actively involved in the research process itself, engaging in activities beyond being the participants or subjects of the research. Research is about identifying “the right questions”—questions that will lead to meaningful answers.
We all use research skills in our daily lives, whether we are asking questions to learn more about a product we are interested in buying, reading reviews about a particular service to make comparisons, or searching for information on the Internet to learn more. You do not need to have medical or scientific expertise to shape the way research is carried out. You are an expert about your own experience—and your knowledge and perspectives can play an essential role in guiding the research process.
We are working diligently to expand opportunities for your involvement and explore novel approaches for engagement to ensure that the research taking place today will create results that are meaningful for our community. We wish to generate an ongoing discussion between our patient community and researchers. NAAF will act as a collection and distillation point for your feedback and information, which we will gather through many channels.
Your involvement in alopecia areata research can help shape what research is being done and how.
You can help influence the treatments being studied, identify what research is important to fund, influence how research will be carried out, improve outcome measures, and ensure research findings are widely distributed in an understandable way.
Your engagement in the research process will benefit the research itself, future treatments, and everyone involved. Our goal is to inspire and equip you to lead the development, distillation, and distribution of key research outcomes that are meaningful for patients and their families. To learn more about how you can participate, or to share your ideas for creating new opportunities for involvement, please contact us at email@example.com.
Ways to Get Involved
The Health & Research Ambassador (HARA) program seeks to engage, inspire, and equip a new cadre of patient stakeholders to collect and share insights into research questions and outcomes that are meaningful to patients and their families. HARA participants are individuals who have personal experience living with alopecia areata and also have professional ties to the fields of research, medicine or psychology (such as graduate students in these fields) or a strong interest in these areas of study. HARA participants work find a local mental health professional and experienced dermatologist to work with them on training and educating medical doctors and students at regional medical institutions about the importance of addressing mental health issues in patients with alopecia areata and other dermatologic conditions. Click here to learn more!
Our Legislative Liaisons program aims to help patient stakeholders educate members of Congress about the issues facing the community. The relationship you build with your local senators and representatives will motivate them to take action on your behalf. It is your voice and your story that encourages legislators to begin on working federal mechanisms and engaging government programs with the goal of improving health outcomes. Click here to learn more!
We assist biopharmaceutical companies interested in pursuing treatments for alopecia areata by bringing together patient focus groups to help them understand patients’ needs at very early stages of product development. It is helpful for companies to learn from patients about what it’s like to live with the different forms of alopecia areata, what it’s like to be diagnosed, what treatments they use and what their hopes are for new treatments. Interested in participating in future focus groups? Please contact us at firstname.lastname@example.org.
We convene research summits every two years to review progress and to direct our funded and promoted research. We bring together leading experts with new investigative partners, representatives from government and industry, and patient stakeholders, to get a broad and varied perspective. Individuals with alopecia areata, caregivers, and family members provide an important bridge between those studying the disease and those personally affected by it. Click here to learn more! Interested in participating in future Research Summits? Please contact us at email@example.com.
The Alopecia Areata Registry, Biobank & Clinical Trials Network (the Registry) is a centralized database and store of well-characterized samples, available to investigators studying this disease and pharmaceutical companies developing treatments for it. This information enables researchers to study the molecules that make people with alopecia areata unique. Donating your data and samples is an empowering act that makes you a driver of the future of alopecia areata research. Click here to learn more!
By participating in a clinical research study, you play an important role in the fight to treat and cure alopecia areata. Clinical research uses human volunteers to answer specific health questions, to determine whether experimental treatments or new ways of using known therapies are safe and effective under controlled environments, or to address health issues in large groups of people or populations in natural settings.
By participating in a clinical research study, you play an important role in the fight to treat and cure alopecia areata. Clinical research uses human volunteers to answer specific health questions, to determine whether experimental treatments or new ways of using known therapies are safe and effective under controlled environments, or to address health issues in large groups of people or populations in natural settings. Click here to learn more!
We invite you to share your thoughts about what specific research questions you would like us to consider for funding. The suggestions received will be evaluated to help us identify and prioritize specific topics to study. Click here to share your ideas for creating new opportunities for involvement, or contact us at firstname.lastname@example.org.