Top Ten Research Priorities for Brain and Spine Cavernous Malformations

Salman et al. (2016) full text summary PDF

For which topic were research priorities identified?

brain and spine cavernous malformations

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

Despite the availability of microsurgical excision and stereotactic radiosurgery for cavernoma treatment and known genetic causes of most familial forms of cavernoma, uncertainties remain about cause, diagnosis, prognosis, treatment, and care.

What was the objective?

to prioritize uncertainties about brain and spine cavernomas for researchers and funding agencies

What was the outcome?

a ranking list of 10 research questions

How long did the research prioritization take?

No information provided.

Which methods were used to identify research priorities?

JLA method

How were the priorities for research identified exactly?

Step 1: setting up PSP: steering group established, stakeholders and partner organizations identified. Step 2: collecting research questions: via survey, 2268 uncertainties submitted. Step 3: data processing: out-of-scope removed, duplicates combined, check against evidence, resulting in longlist of 79 unique uncertainties, steering group worked in pairs to further shorten list to 54 uncertainties. Step 4: interim ranking: via survey, participants were asked to rank uncertainties, resulting in shortlist of 31 uncertainties. Step 5: final prioritization: workshop: small group discussions and small group rankings, plenary discussion, consensus on a final list of 27 uncertainties

Which stakeholders took part?

Patients, carers, healthcare professionals. Survey: 299 participants (63% patients, 18% healthcare professionals, 19% others). Interim ranking: 136 participants. Workshop: 29 participants: 41% patients, 31% healthcare professionals, and 28% others.

How were stakeholders recruited?

No information provided.

Were stakeholders actively involved or did they just participate?

Stakeholders not only participated but were also actively involved in the research prioritization process: They were part of a steering group. The steering group consisted of patients, carers, healthcare professionals, representatives of patient support organizations, and an information specialist. The members were involved in data processing.