Other Research Opportunities
Cure SMA works independently and with a variety of stakeholders to support research into the experiences, goals, opportunities and challenges of our community.
These additional research oppportunities include interviews, surveys, experiments and other activities. For example, if you choose to take part in one or more of these research activities, you might:
- Participate in studies that explore different aspects of living with SMA, including nutrition, breathing, or mobility.
- Offer your opinions and experiences to key decision makers, to help shape current and future development of treatments.
- Share your goals and priorities to help improve the standard of care for SMA.
Below is a list of research activities currently recruiting new participants. Please note that this page does not include clinical trials that are currently recruiting participants. For that, please see our clinical trials currently recruiting page.
Research Activites Currently Recruiting
Adelphi Values' RO7350A Interview Study
What: A 60-minute interview via telephone or Skype about living with SMA/providing care for an individual with SMA.
Who Can Participate: Caregivers and individuals with SMA in the US and UK. In the US, the primary need is for caregivers of individuals with SMA type I; individuals aged 12-17 years old with SMA type II or III (ambulatory and non-ambulatory); and caregivers of individuals aged 12-18+ years old with SMA type II or III (ambulatory and non-ambulatory).
How to Participate: Contact Jessica Braid, Adelphi Values, via email, telephone or fax: email@example.com, telephone 617-399-9643, fax +44 (0)1625-577-328.
C Space Research Project
What: An opportunity to join an online community of caregivers. Through this community, you will participate in surveys, discussions and other activities to share your opinions and experiences on a number of topics.
Who Can Participate: Caregivers of those with SMA. Caregivers for all ages and types are welcome, and there is a strong need for caregivers of those recently diagnosed with SMA.
How to Participate: Visit https://www2.brandinvitation.com/wix/p1528040.aspx?said=M36fbq33W&pcid=CSMA&csid=na&aud=68&cid=187&asid=na&enpt=lp&lang=9&l=9&udv=NL.
Robotic Prototypes for Physical Independence
What: A 20-30 minute online survey on attitudes toward assistive robotic for repositioning, transferring, and personal care and how they may improve the quality of life for those with physical disabilities and seniors.
Who Can Participate: Individuals with all types of SMA aged 18+, in addition to caregivers, family members, and friends aged 18+ of those with all types of SMA.
How to Participate: Visit http://goo.gl/H9ILGQ.
Qualitative Analysis of the Clinical Outcomes Assessments (COAs) in Spinal Muscular Atrophy
What: A brief online survey, with the option of also taking part in a 60-minute telephone interview, exploring how SMA impacts physical functioning, activities of daily living and more broadly, health related quality of life.
Who Can Participate: Patients (aged 18 or over), and caregivers of younger patients (aged 2-18), with Type 2 or Type 3 SMA.
How to Participate: Please click on this direct link for more information and to take the survey: https://surveys.w3dl-ask.com/survey/selfserve/2113/161109, or contact Bill Gehringer at firstname.lastname@example.org for more details.
Participation in any survey, focus group, or other patient voice project is entirely voluntary. You may complete all, some or none of questions asked in each exercise. Before deciding to participate, please take a moment to review this privacy notice. This explains how the information in the survey might be used, and also explains the steps that we take to safeguard your information:
This information may be shared with Cure SMA grant recipients, content providers, sponsors, service providers or other third parties to advance the goals of research, education, dissemination of information and otherwise in fulfillment of the goals of Cure SMA. Cure SMA uses Personal Information to assist in recruiting individuals into clinical studies and trials, providing aggregate disease statistics to third parties, providing de-identified individual patient disease information to third parties, contributing data to third party journal publications, and to refer patients to specialized SMA clinical centers. Such third parties are obligated to maintain the confidentiality of Personal Information and are not authorized to use such information for any purpose other than its intended purpose. Unless we have your consent or as required by law, Cure SMA will not share your Personal Information with any person or entity other than those affiliated with Cure SMA, entities acting on behalf of Cure SMA and relevant third parties such as Cure SMA research grant recipients. By submitting Personal Information through the Sites or to a Cure SMA contact, you authorize Cure SMA to share this Personal Information for the purposes identified above.