What to Expect for Patients
What to Expect?
Participants have a screening/baseline visit at Boston Medical Center or Columbia University Medical Center.
At a baseline visit, a participant will have:
- A physical exam
- Blood tests and blood genetic tests
- Urine tests
- An electrocardiogram (EKG)
- Questionnaires
- PYP Scintigraphy (a type of XRAY)
- A cardiac ultrasound test (echocardiogram)
- A six-minute walking test and another test of standing, walking and balancing.
- Optional COVID-19 antibody test and questionnaire
If the results of the first visit are consistent with ATTR amyloidosis, participants are then offered similar six months and twelve months visits.
- 6-month Visit: This visit would include all of the tests done at baseline, except for the echocardiogram and PYP Scintigraphy.
- 12-month Visit: This visit would include all of the tests done at baseline, including the echocardiogram, but not the PYP Scintigraphy
If after the first visit, the results are not consistent with ATTR amyloidosis or its genetic variants, the study would request telephone visits again at six and twelve months.
Benefits of Participating in SCAN-MP
You may benefit from this study by discovering if you have cardiac amyloidosis and would also benefit learning about it as early as possible. Additionally if you have the hereditary cause of cardiac amyloidosis, your family may also benefit in finding out if they also have the same genetic variant. Lastly you will benefit by being compensated for your time spent participating in our study. We compensate every in-person visit that you complete. We compensate $100 for our baseline visit, $50 for our 6 month visit, and $100 dollars for our 12 month visit. We request that patients who are found to have cardiac amyloidosis return to the site for 6 month and 12 month visits for follow-up testing.
Risks of Participating in SCAN-MP
Blood draw: Having blood drawn can result in pain or discomfort, bruising or bleeding.
Scintigraphy: You would be exposed to radiation from a nuclear medicine scan, called Scintigraphy. The scan is already being used to diagnose people with this disease in later stages, but we are trying to find out if it should be used earlier, as soon as someone has symptoms. This scan is being done for research purposes. The dose of radiation used for nuclear imaging tests is very small.
What to expect in a visit, explained by a SCAN-MP team member:
(In Spanish)
(In English)