Biohaven Pharmaceuticals are working with Engage Health on this research project to learn more from families impacted by SCA types 1, 2, 3, or 6 regarding the burden and impact of these conditions on the lives of those living with them.
To be eligible you must:
- Be a person, or spouse/parent/caregiver of a person who has symptoms and has been diagnosed with SCA types 1, 2, 3, or 6. Please note, if your spouse/parent/child passed away within the last two years, you can still participate
- Be able to consent to enter into the study
- Provide confirmation of condition (e.g. any form that ties your/your spouse’s/your child’s name to the diagnosis with the specific SCA type such as a genetic testing report, a copy of chart note, or another document)
- Have the ability to participate in the RSVP which includes a questionnaire and subsequently an interview in English, German, French or Portuguese irrespective of country of residence and the ability to read and write in English, German, French or Portuguese, and can sign an informed consent
- Have access to a computer and internet browser prior to the start of the online videocall interview. Please note, if this isn’t possible or you would prefer, the interview can be conducted over the phone.
- Be willing to participate in a 90-minute telephone interview between now and Friday, March 3rd
- If you are a caregiver you have gained the consent of the person who has been diagnosed
Your involvement would consist of signing a consent, filling out an RSVP survey (which includes certain self-assessments), providing a document that shows proof of diagnosis, and participating in a 90-minute recorded interview between now and Friday, March 3rd which can be conducted in English, German, French or Portuguese.
For your time, you will be paid a $200 honorarium (paid in equivalent GBP). Please note that only those that are selected for the interview will be paid the honorarium, although the information you provide in the RSVP can still be used for research purposes if you wish. There is no preparation required for you to participate.
If you would like to participate in the research interviews, please:
- Go to this link to RSVP with dates and times that you are available. Please note that times outside of standard business hours are available.
- At the screen, please tick the box that says “Check if you have no code” to proceed to the RSVP
- Once you have completed the RSVP, someone from the Engage staff will contact you to confirm whether you will be selected for the interview and if you have been selected, the date and time of your telephone interview will be arranged.
If you would like to forward this invitation to other patients or families who speak English, German, French or Portuguese who are impacted by SCA types 1, 2, 3, or 6, please do so.
If you have questions, concerns or complaints about the research you can contact Engage Health at pengel@engagehealth.com to arrange a call back.
If you find the interview upsetting in any way, please contact the Ataxia UK Helpline (Mon-Thurs, 10:30-2:30) on 0800 995 6037. We are here to support you.
Please note – data from this study will be stored and analysed outside of the UK, in accordance with the Engage Health privacy policy and thus data protection regulations may differ from those of the UK and the EU. For more information on how your data will be analysed, please see Engage Health’s Privacy Policy.
Interviews will be conducted soon, please follow the directions above if you would like to participate.
