HNF had the opportunity to connect with Kathleen Bogart, PhD, the Principal Investigator of the Adults with Rare Disorders Support Study in partnership with the National Organization for Rare Disorders (NORD). She is an Assistant Professor of Psychology at Oregon State University, where she studies the psychosocial needs of people with rare disorders and has a rare disorder herself. Dr. Bogart also serves on the Board of Directors of a NORD member organization.

What is the study about?

The Adults with Rare Disorders Support Study is the first large-scale study about the information and psychosocial support needs of people living with rare disorders. The study will assess these needs, from the perspectives of  patients with a variety of rare disorders, to find similarities and differences across disorders.

It’s crucial for as many people living with a rare disorder participate in this study to accurately reflect the diversity within the rare disorder community. Data can be published with 60 study participants per disorder.

How do patients participate in the study?

  1. There are two ways to participate: Patients can take a 40-minute online survey about their experiences, providing information and support needs related to their rare disorder (paper forms are available by request). If it is physically difficult to respond, someone may enter responses for the participant.
  2. During the survey, participants can opt to sign up for a second study. This study involves an online focus group (video, not in person) about the information and psychosocial support needs with others with rare disorders. Participation in the survey is required in order to be eligible for the focus group, but the focus group study is not required to participate in the survey. Focus group members will be paid $20 for participation.

Who is eligible to participate?

In order to participate, patients must be 18 or older, be able to communicate in English, and have a rare disease or disorder or undiagnosed rare condition. Caregivers who do not have a rare disorder themselves are NOT eligible to participate at this time.

Disorders are generally considered rare if it affects fewer than 200,000 affected individuals in the United States, or fewer than 1 in 2,000 in Europe. A list of rare disorders can be found at:

https://rarediseases.info.nih.gov/diseases/browse-by-first-letter.

Because rare disorders are discovered and prevalence estimates change frequently, patients may participate even if their disorder does not appear on the list.

What will be done with the study findings?

A summary of results will be sent to all participants. To help NORD, rare disorder organizations, and healthcare professionals meet the needs of people with rare disorders, results will be shared through reports, conference presentations, and scientific publications.

Who are the researchers?

Kathleen Bogart, PhD will be joined by Co-Investigator Veronica Irvin, PhD, MPH, an Assistant Professor of Public Health at OSU. She has experience analyzing information offered by support organizations.

For more information on the study, contact : [email protected] or 541-737-1357.

Click here to participate in the study