CP & Research - yes, but what?

A recent study (Consensus research priorities for cerebral palsy: a Delphi survey of consumers, researchers and clinicians) published in Developmental Medicine and Child Neurology aimed to identify questions for future research that were agreed to be a high priority.Method An expert panel of consumers, researchers, and clinicians was assembled (n=127) and surveyed.

Sadly, like so much published research, the full study is inaccessible to the lay reader - as a fee is required to do so. The abstract is available, however, and copied here:

ABSTRACT
Aim Research funds for cerebral palsy are scarce and competition for them is strong. This study aimed to identify questions for future research that were agreed to be a high priority.
Method An expert panel of consumers, researchers, and clinicians was assembled (n=127) and surveyed using a Delphi survey comprising three rounds. In round I, participants identified three important research topics. Three parallel surveys were constructed: (1) consumers; (2) intervention researchers and clinicians; and (3) aetiology and prevention researchers. In rounds II and III, participants rated priorities using a seven-point Likert scale. Questions reaching consensus were itemized and those not reaching consensus were discarded.
Results Consumers identified questions in the themes of prevention/cure, quality of life/community participation, and service provision/intervention. Intervention researchers/clinicians identified questions in the themes of effective outcomes and effective research/services. Aetiology and prevention researchers identified questions in the themes of infection/inflammation, focus on timing, haematology, research tools, neuroregeneration, and genetics. Fifty per cent of the consumers' priorities were also identified by professionals.
Interpretation Research priorities change as evidence is established. Phase II of this project is to develop a web portal with international collaboration. As evidence builds for one research question, it will be added to the web portal and unanswered questions will become the priority.

My attention was drawn by:

1. The acknowledgement of the low priority funders place on funding cerebral palsy research - useful background support for anyone considering applying for research funding!

2. The language of "consumers": the full text would no doubt reveal whether these were people (presumably adults?) with cerebral palsy or parents or other family members or carers. 

3. The (apparent) absence of educators on the expert panel. 

4. There will be no surprise, surely, in the priorities of the different groups? I was interested, nevertheless, in the priorities of the Consumers: prevention/cure; quality of life/community participation; service provision/intervention. What does disappoint - not a priority for any of the three groups - is the complete absence of pedagogical research priorities. 

5. The intention to create a web portal with international collaboration - an interesting application of the internet.