In Progress
The ICHOM team is currently developing a Set of Patient-Centered Outcomes Measures for Spinal Muscular Atrophy (SMA), prioritizing patient-centered outcomes measurement for SMA patients to bring forth ground-breaking improvements in how SMA outcomes are measured and evaluated, ultimately enhancing patient care globally.
Under the leadership of a renowned expert in the SMA field, this initiative aims to enhance the global measurement and assessment of SMA. The recruitment of clinical experts and patient representatives for the Working Group is in progress.
The sole requirements for joining the Working Group are:
- Experience of spinal muscular atrophy, whether through direct lived experience, as a caregiver, or in a professional role.
- An interest in co-producing research (although this is not mandatory, and ICHOM will ensure that participants fully comprehend the process before and during their involvement).
- Having the ability to participate in teleconference calls in English every 4-6 weeks, lasting 1.5-2 hours, which necessitates a stable internet connection or the capability to dial in via telephone.
The roles and responsibilities of Working Group members include:
- Committing 2-4 hours per month.
- Attending and actively participating in 1.5-hour Working Group calls.
- Contributing to call content based on personal expertise and experience.
- Completing post-call surveys promptly.
- Providing feedback for academic publications, flyers, and reference guides.
- Being acknowledged as a named author in academic publications.
- Advocating for the Set at conferences and other public platforms.
We are also hiring a Research Fellow to help us conduct the research required for the development of a Set of Patient-Centered Outcome Measures for Spinal Muscular Atrophy. This will be a remunerated role and the ideal candidate will be an early-career researcher with experience in Spinal Muscular Atrophy outcome assessment and/or PROM tools. Please find the job posting here.
To participate in the ICHOM Spinal Muscular Atrophy Working Group and shape the future of spinal muscular atrophy care, please email ICHOM Project Manager, Yasmine Saoud, at y.saoud@ichom.org
Team that developed this set
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