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News

10.27.23

Amyloidosis Research Consortium (ARC) and QualityMetric (QM) Introduce the ATTR-QOL Questionnaire

Rhode Island, August 24, 2023 — QualityMetric (QM), a leading global clinical outcomes assessments (COA) solutions provider and scientific consultancy specializing in patient-reported outcomes (PRO), has announced its partnership with the Amyloidosis Research Consortium (ARC) in supporting the licensing and use of the Transthyretin Amyloidosis – Quality of Life Questionnaire (ATTR-QOL), a patient-reported outcome (PRO) survey specific to ATTR amyloidosis.

“We heard from the amyloidosis community on the importance of a disease-specific quality of life tool to gain better understanding of the burden of disease and value of new treatments in ATTR amyloidosis. We are proud to have partnered with QualityMetric in the development, validation, and licensing of the ATTR-QOL, and are thrilled to have worked with patients and experts in the field to provide a tool for clinicians and researchers that will better capture the patient experience of ATTR amyloidosis,” stated Isabelle Lousada, Founder and CEO, ARC.

The development of the ATTR-QOL came in response to the needs of the cross-stakeholder community researching transthyretin amyloidosis (ATTR), a rare disease characterized by a broad range of symptoms and impacts. ARC led the development of the ATTR-QOL through collaboration with measurement experts, clinicians, researchers, patients, patient advocates, and drug developers. The development process was scientifically rigorous and adheres to PRO development best practices. The ATTR-QOL can be used in both clinical practice and clinical trials. It was developed to be used with patients with all types of ATTR amyloidosis.

ATTR-QOL includes 3 sections: (1) symptoms, (2) impacts, and (3) ATTR amyloidosis type and common comorbidities. Respondents rate the frequency and severity of symptoms, then rate the impact of ATTR amyloidosis on different aspects of their lives, including physical health, mental health and emotional wellbeing, daily activities, basic and instrumental activities of daily living, socializing and relationships, and work and productivity.

“Without Advocacy from ARC, individuals with ATTR have no voice in dealing with the burden of this illness. For the most part, global healthcare systems don’t understand the natural history of this disease making the evaluation of treatment effects impossible to sort out. We are proud of this partnership with ARC. Together, we can measure what matters to PATIENTS; and bring their voice into the development of meaningful treatments and interventions,” stated Garth (Gus) Gardner, Chief Executive Officer, QualityMetric.

The collaboration of QM’s significant experience in supporting rare disease clinical research and care with patient-reported outcomes paired with ARC’s commitment to the amyloidosis community will help to improve understanding and treatment for individuals with ATTR-Amyloidosis.

 

ABOUT ATTR Amyloidosis

Amyloidosis is a term for a group of rare diseases in which abnormal proteins deposit as amyloid in tissues and organs.  ATTR amyloidosis occurs when the protein, transthyretin, becomes unstable, misfolds, and deposits in the heart, nervous, and musculoskeletal system. There are two main types of ATTR: variant (ATTRv, or hATTR, for hereditary) and wild-type (ATTRwt). ATTRv   ATTR typically presents as polyneuropathy (i.e., peripheral or autonomic neuropathies) and/or cardiomyopathy (ATTR-PN and ATTR-CM, respectively).

ABOUT QualityMetric

QualityMetric works with the world’s leading healthcare and life sciences companies to measure and better understand outcomes through the creation, administration, and review of general and patient-specific health surveys. Founded in 1997, QM combines its proprietary scientifically validated general health and disease specific surveys with its enabling technology, advanced analytics, and sector expertise to work with all the world’s largest pharmaceutical companies in clinical trials and patient surveillance. For more information, please visit: QualityMetric.com

ABOUT Amyloidosis Research Consortium

ARC’s mission is to improve and extend the lives of those with amyloidosis. ARC is committed to collaborative efforts that accelerate the pace of discovery, expand patient access to the most effective care, and improve short- and long-term outcomes. ARC’s outreach and education inform and empower patients, families, caregivers, physicians, and researchers. To learn more visit: Amyloidosis Research Consortium (ARC) (arci.org)

 

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Johnny Rosa
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Amyloidosis Research Consortium
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