International Spinal Research Trust - 2020 Survey for the SCI community

To understand the needs of the SCI community in regards to SCI research.
Disclaimer: all information captured in this survey will remain anonymous and will not be shared.

Question Title

* 1. What country do you live in?

Question Title

* 2. Which spinal injuries centre did you attend for your rehabilitation?

Question Title

* 3. How long has it been since your spinal cord injury?

Less than 5 years

5-10 years

10-20 years

20+ years

Question Title

* 4. On a scale of 1-5, how much information do you feel the spinal injuries centres (spinal units) gave you about research?

No information

A lot of information

Clear

i We adjusted the number you entered based on the slider’s scale.

Question Title

* 5. Do you feel that receiving more detailed information (i.e. from seminars/lectures/literature) about current research whilst in the spinal injuries centres (spinal units) would be beneficial?

Yes

Question Title

* 6. Have you ever participated in a clinical trial? (If unsure, all clinical trials are officially registered on clinicaltrials.gov)

Yes

Question Title

* 7. Would you be willing to participate in a mildly invasive clinical trial (e.g. drug or muscular injection)?

Yes

Question Title

* 8. Would you be willing to participate in a moderately invasive clinical trial (e.g. bloodstream or spinal fluid procedure)?

Yes

Possibly

Question Title

* 9. Would you be willing to participate in an extremely invasive clinical trial? (e.g. surgery)

Yes

Possibly

Question Title

* 10. Have you been abroad for an experimental treatment?

Yes

Question Title

* 11. If so, what type of treatment did you receive? (Please skip if not applicable)

Stem cell transplant (via surgery into the spinal cord or brain)

Stem cell transplant (via injection into bloodstream or cerebral spinal fluid)

Spinal stimulator implant

Rehabilitation

Other drug(s) delivered by surgery into the spinal cord or brain

Other drug(s) delivered by injection into bloodstream or cerebral spinal fluid

N/A

Other (please specify)

Question Title

* 12. If so, on a scale of 1-5 how satisfied were you? (Please skip if not applicable)

Not satisfied at all

Extremely satisfied

Clear

i We adjusted the number you entered based on the slider’s scale.

Question Title

* 13. On a scale of 1-5, how closely do you follow SCI research?

Not at all

Very closely

Clear

i We adjusted the number you entered based on the slider’s scale.

Question Title

* 14. Where do you follow SCI research? (Tick multiple if applicable)

Facebook

Twitter

Youtube

News aggregator

SCI forum

I do not follow SCI research

Other (please specify)

Question Title

* 15. If you don't follow SCI research, could you please explain why? (Please skip if not applicable)

Question Title

* 16. How do you feel when you hear/read about new SCI research? (Tick multiple if applicable)

Excited

Indifferent (don't feel strongly one way or the other)

Desensitised (seen too much, not interested anymore)

Want to understand how it will affect me

Frustrated

Sad

Question Title

* 17. How easy is it for you to understand the SCI research news and literature?

Very easy

Easy

Neither easy nor difficult

Difficult

Very difficult

Question Title

* 18. What would make you follow research more closely? (Tick multiple if applicable)

If it were easier to understand

If it were more accessible on social media

If the scientific community explained it clearly to us

If I knew where it was going

If I knew how it would potentially impact me

I already follow it very closely

Other (please specify)

Question Title

* 19. On a scale of 1-5, how informed do you feel you are about SCI research?

Not at all

Very informed

Clear

i We adjusted the number you entered based on the slider’s scale.

Question Title

* 20. On a scale of 1-5, how important do you think advancements in SCI research will be in your life? (How likely do you feel you will benefit from research?)

Not important (I won't benefit at all)

Extremely important (I will certainly benefit)

Clear

i We adjusted the number you entered based on the slider’s scale.

Question Title

* 21. How soon do you think research will benefit you?

Within 5 years

Within 10 years

Within 20 years

In 30+ years

I don't believe it will benefit me

Question Title

* 22. How involved would you like to be in the research process? (Tick multiple if applicable)

I would like to be updated on the latest developments

I would like to support through raising awareness

I would like to support through advocacy and lobbying

I would like to support financially

I would like to take part in clinical trials

I would like to have a say in how research happens

I would like to become a researcher

Not at all

Other (please specify)

Question Title

* 23. Do you feel you have any influence over research?

Yes

Question Title

* 24. Do you think research is well funded?

It is very well funded

It is very well funded, but spent poorly

It it is well funded, but more would help

It is not well funded

I don't know

Question Title

* 25. In order to aid research, would you be willing to share the following types of information? (Tick multiple if applicable, leave blank if none apply.)

Personal data, e.g. age, gender, region, occupation, etc.

Duration of injury and injury classification (e.g. ASIA classification)

Other medical data, e.g. medication, continence, comorbidities (such as diabetes, osteoporosis, cardiovascular disease, etc.)

Question Title

* 26. Would you be more likely to donate or help fundraise in support of research if it would positively impact your life in the next 5 years?

Yes

No, the timeline is not important as long as there is progress in the field

No, direct personal impact is not important as long as there is progress in the field

No, I do not believe it is the role of charity to fund SCI research

Question Title

* 27. Are you aware of Spinal Research and its work?

Yes

To follow the latest research developments, sign up to our newsletter and follow us on Facebook, Twitter and Instagram.