Table 1.

Summary of main survey findings on best practices and characteristics of specialized amyloidosis centers.

Topic	Findings
Characteristics of the amyloidosis centers, patients, and patients’ journey	Most amyloidosis centers (74%) had been established for ⩾5 y
	Cardiologists at all centers reported an increased number of patients with ATTR-CM in the past year, which most (73%) attributed to increased disease awareness among community physicians
	The centers had more patients with ATTR-CM versus AL amyloidosis (71% vs 29%) and wild-type ATTR-CM versus variant ATTR-CM (73% vs 27%)
	Most patients who participated in the survey found their amyloidosis center via clinician referral (44%) or their own research/network (44%)
	Most patients (81%) who participated in the survey had received care at ⩾2 amyloidosis centers
	The most common reasons for changing centers were location (38%) and dissatisfaction with care (23%)
Collaboration, coordination, and outreach between amyloidosis centers and community physicians	Most patients (74%) treated at the amyloidosis centers were from local or regional areas
	After referral, 21% of cardiologists at the centers reported sole management of patients (primarily at the request of the community physician)
	Educational initiatives were used at most amyloidosis centers (62%) to increase awareness of their expertise
Best practices and ideal features of the amyloidosis centers	Cardiologists most often cited diagnostic capabilities and staff expertise as the best practice of their amyloidosis center (47%), followed by multidisciplinary care and time spent with patients (33% each)
	Patients most often cited physicians’ expertise as an ideal feature of amyloidosis centers (63%) followed by time spent with patients (38%)
Diagnostic approaches followed at amyloidosis centers	All of the surveyed cardiologists routinely confirmed diagnoses of ATTR-CM with additional testing
	All of these specialists also ruled out AL amyloidosis: 80% before ordering PYP imaging, 13% at the same time as PYP imaging, and 7% after PYP imaging
	At nearly all (93%) of the amyloidosis centers, screening for potential “hot spots” for undiagnosed patients with ATTR-CM was conducted
Amyloidosis center approaches to multidisciplinary care	Most amyloidosis centers (73%) required patients to visit different specialists in different offices within a hospital
	The majority of amyloidosis centers (64%) held multidisciplinary meetings to discuss patients at least once monthly
	Staff at the amyloidosis centers often included multiple specialists, advanced practice clinicians, pharmacists, genetic counselors, and patient and/or research coordinators
Barriers to patient access to amyloidosis centers	The most common challenge for patients was traveling to amyloidosis centers
	Travel was particularly difficult for patients with neuropathy, and those who required a caregiver to drive them
	Approximately 38% of patients had a one-way travel time ⩾3 h
	A total of 44% of patients drove to their amyloidosis center with someone
Role of clinical research and registries	All amyloidosis centers participated in clinical trials and had institutional registries; half participated in national/international registries
	Most patients surveyed were aware of (94%) and had participated in (75%) clinical trials or registries
Collaboration between amyloidosis centers and patient support organizations	Advocacy groups supported amyloidosis centers by providing physician and patient education, sponsoring patient support groups, and providing information about clinical trials
	When selecting the amyloidosis centers listed on their websites, most advocacy groups considered the program’s multidisciplinary team, number of patients treated, years in existence, and types of amyloidosis treated
	Most amyloidosis centers (75%) hosted patient support meetings

AL, light-chain amyloidosis; ATTR-CM, transthyretin amyloid cardiomyopathy; PYP, ^99mtechnetium-pyrophosphate.