AGM2013: Research Update (Dr Siva Nair)

The third paper presented was a research update on treatment, given by Dr Krishnan Padmakumari Sivaraman Nair of the Royal Hallamshire Hospital, Sheffield. Dr Nair indicated that he tended to abbreviate his name to Dr Siva Nair.

He indicated that HSP affects 1.3 in 100,000. He has been reviewing papers published about HSP, and identified that he had found 356 papers published since 1971, 142 in the last 10 years, and only 11 relating to treatment.

The databases he listed were:
AMED, http://www.ebscohost.com/corporate-research/amed
EMBASE, http://www.embase.com
PsycINFO, http://www.apa.org/pubs/databases/psycinfo/index.aspx
BNI, http://www.library.nhs.uk/help/resource/bni
CINAHL, http://www.ebscohost.com/academic/cinahl-plus-with-full-text

Dr Nair then went on to describe three treatments: FES, Botox and Intrathecal Baclofen, focussing on the latter.

Intrathecal Baclofen uses a pump and tube to deliver the muscle relaxing drug directly to the spine. One of the main issues is that it is very easy for the pump to deliver too much or too little drug. As an option, it is not one to be considered lightly.

Dr Nair posed the question why were there so few papers on treatment? A comparison with MS (I think) shows that about half of the papers are to do with treatments.  One factor is that there are many groups who are actively influencing research there. He suggested that there was no reason why this couldn't be true for HSP as well. There were four strategies he suggested for getting involved;

1 - Participate in consultation events.
2 - Collaborate - get involved in research
3 - Control the research by selective funding
4 - Control the research by becoming a member of a steering committee.

Dr Nair concluded by describing a research programme which he is currently seeking funding for. He wants to look at the use of FES in the community. Most FES research has been done in the lab and Dr Nair wants to look how it works for users in normal day to day use. He plans to measure walking, falls, quality of life etc. at the beginning, then give either FES or an AFO for 12 weeks, re-measure, switch treatment for a further 12 weeks, measure again and understand what people prefer. The study will take place in Sheffield and Salisbury. He will contact the HSP support group when funding is secured. He will be seeking participants.

Although Dr Nairs presentation had the least notes it gave me the most questions. Regular readers will know I've been identifying the number of research papers and I get a much larger number from one database. I noted that Dr Nair used the word paraperisis all the time and my search covers this and paraplegia. I didn't get a chance to chat to Dr Nair about this after his presentation.

In writing this post I was thinking about the involvement strategies, and was looking up about consultation events since I understood this the least. A quick search found that RareDiseaseUK have recently completed a consultation event about rare disease policy in the UK. http://www.raredisease.org.uk. Firstly this consultation closed May 2012, so I'm disappointed not to have found and responded. However the response document and other supporting stuff on the website is good, and these will form another blog post or two, and another organisation to join.

The main supporting report is here: http://www.raredisease.org.uk/documents/Website%20Documents%20/rare-disease-impact-report.pdf  There is also a report into the perception of funding:  http://www.raredisease.org.uk/documents/RDUK-Research-Funding-Report.pdf 

I could picture the other involvement strategies more in my head and I'll cover those on another post or three.