A note from Cure SMA: We’re passing on information about this new interview study to the families in our community. It provides an opportunity to make your opinions known to an influential group of decision makers, in keeping with our mission of supporting advocacy and awareness. Your participation in this is voluntary. In addition, Cure SMA does not share your email address or personal information without your consent. You will provide that information directly only if you decide to participate in the interview.

We are contacting you today to invite you to take part in a research study being conducted by Adelphi Values. Adelphi Values is a health outcomes organization that works with pharmaceutical companies to assess the impact of health conditions and treatments on peoples’ lives.

Adelphi Values are conducting an interview study on behalf of several pharmaceutical companies who are conducting research in SMA to explore the patient and caregiver experience of Spinal Muscular Atrophy (SMA) in both the US and the UK.

Adelphi Values would like to invite you to take part in an interview about living with SMA/providing care for an individual with SMA. We would like to better understand the symptoms of SMA and how SMA affects you/the individual with SMA that you provide care for in daily life. Your contribution to the study will help to support pharmaceutical companies with their research efforts relating to potential treatments in SMA and also increase the knowledge of SMA amongst the wider scientific community. All you would have to do is participate in a single, hour-long interview to talk about your experience of SMA.

The interview will last approximately 60 minutes and take place via telephone or Skype. The interview will be conducted by an Adelphi Values trained interviewer and will be scheduled at a time that is convenient for you. During the interview you will be asked to provide descriptions of the symptoms you/the individual with SMA you provide care for experiences, and the affect that SMA has on your/their life. The information you provide during the interview will be combined with information from other individuals with SMA and caregivers to help us understand the experience of SMA. All information that you provide will be treated confidentially and will be anonymized by assigning you a unique ID number.

Your involvement in the study is voluntary and the interview will be audio-recorded with your consent.

Thank you for taking the time to read this letter. We look forward to your participation.

If you have any questions about this letter or the study, or if you are interested in taking part in this study, please contact Jessica Braid, Adelphi Values, via email, telephone or fax:

Email: [email protected]
Telephone: 617-399-9643
Fax: +44 (0)1625-577-328

When registering your interest please be ready to provide the following information:

If you are an individual with SMA:

  • Your age
  • Type of SMA you have (must be Type II or Type III)

If you are a caregiver aged 18+ of an individual with SMA:

  • Age of the individual with SMA that you provide care for
  • Type of SMA that the individual you provide care for has (must be Type I, Type II or Type III)
  • Whether you would like to take part in a caregiver interview


The individual with SMA that you provide care for would like to take part in a patient interview (individual must be aged 12 years old or above and able to participate in a 60 minute telephone interview).

What happens next?

Once you have registered your interest in taking part in this study, Adelphi Values will contact you with some further information about the study and an electronic form to collect some background information about you (e.g. age, gender, race and ethnicity, type of SMA, symptoms experienced) to see whether you meet the inclusion criteria to take part.

If you do meet the inclusion criteria to take part in the study, Adelphi Values will send you an information and consent form to read. If you wish to take part in this study you will be asked to sign the consent form and return this to Adelphi Values before any research activities can take place. Adelphi Values will then inform you about the next steps of the study and schedule a convenient time for the interview.