research

OPPORTUNITY FOR PEOPLE WITH WARM AUTOIMMUNE HEMOLYTIC ANEMIA (wAIHA) TO PARTICIPATE IN AN INTERVIEW PROJECT

Global Patients is collaborating on a research project to better understand the experience of living with warm Autoimmune Hemolytic Anemia (wAIHA). The research project is being conducted with IQVIATM, a healthcare research firm (www.iqvia.com), and a pharmaceutical company that is working on developing therapies for patients with wAIHA.

We are seeking individuals diagnosed with wAIHA who are aged 18 years or older.

The research will involve individuals diagnosed with wAIHA participating in a telephone interview lasting approximately 75 minutes. In appreciation of the time required, we are offering $200 to compensate participants for their time.

The purpose of the project is to understand individuals’ experience living with wAIHA and get feedback from individuals diagnosed with wAIHA on some questionnaires that are often used to assess wAIHA in diagnosed individuals. These questionnaires aim to provide researchers and clinicians with an understanding of people’s experiences of living with wAIHA.

If you are interested in participating and are eligible you will not be asked to complete the questionnaires. Instead, we would like to get your perspectives on whether the questions in each of the questionnaires are relevant to your experience with wAIHA, comprehensive, and easy to understand. Your input will help to ensure the questionnaires are suitable for use in future clinical trials to more accurately capture experiences of people living with wAIHA.

The project is strictly for research purposes; there will be absolutely no sales nor promotional activities.

Prior to the interview, IQVIA will ask you to obtain confirmation of your wAIHA diagnosis from your physician or staff at your physician’s office. This information will help us confirm your eligibility for this project.

If you are interested in participating in the project, or have any questions, please contact us at rebeca@global-patients.com

Many thanks for your time and consideration!

#Lupus

#Anemia #Research #PAIDSTUDIES

Hello all! I am still new to my diagnosis and had asked around for some literature to read regarding Borderline Personality Disorder. I wanted to share "the way she feels: my life on the borderline in pictures and pieces" by Courtney Cook. It is a graphic memoir talking about her experience with BPD. I recommend looking into the trigger warning before reading it, if you are interested.

She does talk about eating disorders, sex, body image, skin picking, self-harm, and other difficult subjects.

I also listen to Therapists in the Wild Podcast, but it is less about living with BPD. They talk about DBT therapy and highlight different skills taught there. If you are someone who needs a little more help understanding or refreshing your memory about DBT, it's been very helpful. It can help you get into the practice of using these skills.

If anyone else has any recommendations for books, essays, articles, podcasts, etc about BPD, specifically living with it, I'd love to know.

Thank you!

#BorderlinePersonalityDisorder #BPDDiagnosis #thewayshefeels #readingmaterial #Research #learning

Researchers at the Ability and Innovation Lab at the University of Washington are conducting a study on early mobility aid use for children with cerebral palsy. We are currently recruiting parents and caregivers of children with cerebral palsy under the age of 8 whose first mobility aid was a walker or orthoses. Our study involves a survey and an optional interview (compensated). If you meet these requirements and are interested in participating, please complete this survey to provide information about you and your child’s experiences: redcap.link/CPcaregiver2021 and share with other parents and caregivers. Please reach out to PhD student Nicole Zaino (nzaino@uw.edu) with any questions. Please share with anyone you think may be interested as well!
#CerebralPalsy #Research