Recruiting Those Diagnosed with Cardiac Amyloidosis (ATTR-CM) For Anonymous Survey

Study Aims to Understand How Atrial Fibrillation Affects Symptoms and Quality of Life in Those with Cardiac Amyloidosis

  • Summary: Study of Cardiac Amyloidosis (ATTR-CM) and Atrial Fibrillation
  • Reading time:  2–3 minutes

We have received a request to help with a research study being conducted at the University of Pennsylvania Perelman School of Medicine (Philadelphia, PA, USA). This study has been approved by their Institutional Review Board (IRB) and aims to better understand how atrial fibrillation affects symptoms, daily functioning, and quality of life in individuals with cardiac amyloidosis (ATTR-CM), as well as whether rhythm-control strategies for atrial fibrillation are associated with symptom improvement.

Below is the information we received from the study investigators as well as the link to take the survey if you meet the criteria below, starting with having been diagnosed with cardiac amyloidosis.

INVITATION FROM THE STUDY INVESTIGATORS

If you have been diagnosed with cardiac amyloidosis, are 18 years or older, and can read and understand English, you are invited to complete an anonymous, voluntary online survey. The survey takes less than 15 minutes.

What information is collected and how it will be used

  • The survey does not request personally identifying information such as your name, email address, or mailing address.
  • We ask about your health history, exercise and activity habits, atrial fibrillation symptoms, and treatments you have tried. Please do not include personally identifying information in your responses to any open-ended questions.
  • The data collected may include information considered special category data (such as health-related information).
  • Responses will be collected via REDCap (configured so submitted forms do not include IP addresses) and securely transferred to the research team in the United States for analysis.
  • De-identified survey responses will be stored in a secure, password-protected system and may be shared with other researchers for future scientific studies.

Who is processing the data

  • The research team is led by Dr. Saman Nazarian and Dr. Rajat Deo at the University of Pennsylvania. If you have study questions you may contact the team at [email protected].

Sharing and transfer of data

  • Responses are stored temporarily on REDCap and then transferred to secure University of Pennsylvania servers in the United States.
  • De-identified data may be shared with other researchers or research databases for future studies.

Your rights

  • You do not have to participate in the study. 

Risks and benefits

  • The primary risk is a loss of privacy or confidentiality; this risk is minimized because no identifiable information is collected.
  • There are no direct personal benefits and no compensation for participation, but results may improve understanding of how atrial fibrillation and its treatments affect people with cardiac amyloidosis.

Voluntary participation

  • Participation is entirely voluntary. Choosing not to participate will not affect any services or benefits to which you are otherwise entitled.

If you are interested in taking the survey, please click the link below:
https://redcap.med.upenn.edu/surveys/?s=AJXF7PDWDJTJ9EAP?utm_source=stopafib

  • By proceeding to the survey, you will have the opportunity to provide informed consent.
  • No further personal contact will be made beyond this invitation, and responses will remain confidential. If you have any questions about the study, please contact [email protected]

Thank you for your time and consideration.

Sincerely,

The study team

Under the supervision of Dr. Saman Nazarian and Dr. Rajat Deo (Penn Cardiology)