In Europe there are two different projects running questionnaires for people with HSP, which are open until 31 Jan 2021.
Both projects need input from people living with HSP and each asks anyone with any type of hereditary spastic paraplegia (HSP) to fill in a brief online-survey. Each can be completed in about 5-10 minutes. Parents can fill in the surveys for their children.
The TreatHSP project is a collaborative effort between neurologists and researchers around the world. The project aims to develop new treatment options for HSP by studying them from the clinical to the molecular level.
They are asking about peoples earliest symptoms to help clinicians recognise HSP earlier and make a more timely diagnosis.
https://www.surveymonkey.de/r/treatHSP
The PROSPAX network works very closely with researchers from the TreatHSP project and are studying the progression of HSP and Ataxia, specifically SPG7 and ARSACS.
They are keen to ensure their research focusses on the important challenges for people with HSP or spastic ataxia, and are asking about different symptoms you have now or have had previously. They are happy to hear from anyone with any type of HSP.