Participate in Our Adults with Rare Disorders Support (AWaRDS) Research

DSIL members working

COVID-19 Survey

What is the study about?

The Adults with Rare Disorders Support (AWaRDS) project is the largest study aiming to improve quality of life among people with all rare disorders. It is a multi-part project, and the current survey aims to assess the impact of COVID-19 pandemic on people with a variety of types of rare disorders/diseases, including access to healthcare and information and psychosocial support.

What would I do as a study participant?

Take a 20-minute online survey.

Who is eligible to participate?

You must be an adult or the age of majority in your state, be able to communicate in English, and have any 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. A disease is 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 diseases can be found here: https://rarediseases.info.nih.gov/diseases/ browse-by-first-letter. Because rare disorders are discovered and prevalence estimates change frequently, you may participate even if your disorder does not appear on the list.

What will we do with study findings?

We will share the overall results with you and communicate them to decision-makers including rare disorder organizations, healthcare professionals, policy makers, and researchers to ensure the needs of people with rare disorders are met during the pandemic.

 

Blood Cancer Fatigue Management Survey

What is the study about?

We are seeking people with blood cancers to participate in a survey about their blood cancer and experiences with fatigue.

What would I do as a study participant?

Our survey will ask questions about your blood cancer and experiences with fatigue, should last about 20 minutes, and will be conducted primarily online (paper surveys are available upon request). Please complete the survey.

Who is eligible to participate?

Participants who meet the following criteria are eligible:
• Have at least 1 blood cancer (this includes all leukemias, lymphomas, myeloma, myelodysplastic syndromes, and myeloproliferative neoplasms)
• Able to communicate in English
• 18 years old or older

What will we do with study findings?

The purpose of this study is to better understand how living with blood cancer influences fatigue levels and different strategies individuals use to manage their fatigue. Your participation help guide future research and fatigue-related interventions.

 

Rare Disorder Advocate Interviews

What is the study about?

We are seeking to interview 5-7 adults with rare disorders who are advocates. The purpose of this study is to learn more about the lived experiences of people with rare disorders who seek to better the lives of those with rare disorders.  Your views will help us analyze thoughts and opinions about rare diseases from those ‘in the know’ (so to speak).  Additionally, your ideas will be used to help guide and design future research and interventions regarding rare diseases.

What would I do as a study participant?

The interview will be on the topic of rare diseases/disorders, should last no longer than one hour, and will be conducted in person or through the internet or phone. Interviewees will receive a $20 compensation for participating.

Participants who meet the following criteria are eligible:

  • Have at least 1 rare disease/disorder
  • Have engaged in or are currently engaging in any type of rare disorder advocacy work, Advocacy work includes (but is not limited to) seeking to increase awareness, decrease stigma, or change attitudes and policies regarding rare disorders.  Advocates might, for example, share information regarding rare disorders with medical professionals or social media followers, facilitate support groups online or in-person, engaging in rare disorder organizations or movements, representing rare disorders in the media or to local/state/national/international political entities, etc.
  • Have a working email address
  • Available for an interview remotely (via internet or phone) or in-person
  • Able to communicate in English
  • 18 years old or older
Contact the Principal Investigator, Kathleen Bogart, PhD, at kathleen.bogart@oregonstate.edu