ACORN Groups

Core Outcome Domains Identification Group

The role of the Core Outcome Domains Identification (CODI) Group is to deliver the first step on the critical pathway to the development of a core outcome measure set for universal adoption in all acne clinical trials.

Before we can decide how to measure something, we must adopt rigorous methods to identify with reasonable certainty what it is that we want to measure. Until now, many of the outcome measures commonly used in acne trials were devised by clinicians for clinicians; patient input to date has been minimal. The CODI Group will direct and co-ordinate ACORN activities which seek to (a) identify all symptoms, signs and impacts of acne which matter to patients

(b) determine which ones should be measured in all studies seeking to assess the efficacy and/or safety of interventions for treating acne.

Both (a) and (b) will be underpinned by the use of consensus-based methods involving globally representative samples of all relevant stakeholders.

It is vital that the CODI Group is representative of all stakeholders so will include health care professionals, people with acne and people who design, conduct, regulate or fund acne clinical trials in any setting. Methodological expertise is not essential to join this group. At least one member of the Methods Group will join this group so that any requirements for expert advice can be identified at an early stage.

Harmonisation of Lesion Counts Group

There is one outcome which is used in nearly all acne trials – the change in lesion count from baseline. However, the way lesion counting is conducted and reported varies considerably from trial to trial so that pooling of data from independent studies is rarely justifiable.

The development of a core outcome measure set is a lengthy process that will take years to accomplish. In the meantime, the Harmonisation of Lesion Counts Group will seek to standardize the way acne lesion counts are conducted, analyzed and written up for publication.

Membership is open to anyone with an interest in lesion counting as a means of determining the efficacy of acne treatments. Methodological expertise is not essential to join this group. At least one member of the Methods Group will join this group so that any requirements for expert advice can be identified at an early stage.

Systematic Review Support Group

The Systematic Review Support Group will provide expert advice and practical help to project groups which undertake systematic reviews in order to deliver their mission. At the present time, a systematic review of acne impacts is already underway and a review of acne clinical trials versus the CONSORT criteria is in the early stages of development.

Systematic reviewing is labor intensive. The support group can help project teams in a number of ways including but not limited to:

  • Assisting with the development of review protocols
  • Helping to define the scope of literature search strategies or refining ones that turn out to be too specific or not specific enough
  • Helping to locate and retrieve articles or further information and, when necessary, writing to authors
  • Helping to design and test data extraction forms
  • Providing people to extract data
  • Providing advice on methods for quality reviewing data sets and for the detection of bias
  • Providing help with data synthesis and presentation
  • Critically commenting on drafts of the review
  • Providing training to ACORN members inexperienced in systematic reviewing

Membership of this group is open to anyone with an interest in, or experience of, systematic reviewing and/or who has good critical appraisal skills. You can also join this group if you have no previous experience but are willing to learn though doing. You will need access to search engines such as PubMed and databases such as Medline and Embase.

There is deliberately some overlap between this group and the Systematic Review Support Group.

Communications Group

The function of the Communications Group is to take responsibility for the publicity and promotional activities of ACORN as well as the effective collection and dissemination of information locally, nationally and internationally.

The group will manage, expand, update and develop the ACORN website. Members will also work with the Information Management Group to devise, implement and oversee methods for shared working across continents. This will include setting up a user friendly cloud-based platform such as Google Apps for Work that will enable document sharing/archiving, networking/videoconferencing, access to shared resources and is only limited by our ability to exploits its range of features. Once the hub is set up, all groups will be expected to use it as their shared workspace. It will also provide a central repository for all ACORN-related documents.

The Communications Group will also be responsible for managing the ACORN LinkedIn Group and the ACORN Twitter account. LinkedIn will be used as a platform for discussions and the Twitter account as a vehicle to promote ACORN and its activities to a wider audience.

Membership of the Communications Group is open to anyone with an interest in the use of information technology to facilitate academic co-operation at an international level and/or the use of social media to promote research.

Information Management Group

The role of the Information Management Group is to underpin the work of ACORN project groups via the development of easy-to-use databases and other tools to collect, sort, synthesize and disseminate information on publications which report acne clinical trials, identification of outcome domains or development/validation of outcome measures. The aim is to develop resources to facilitate ongoing and future research within and beyond ACORN which are made freely available via the ACORN website.

The Information Management Group will work together with the Communications Group to devise and implement methods for shared working across continents. It will also work closely with the Systematic Review Support Group to devise systems for the extraction, recording and sharing of data to facilitate critical appraisal and evidence synthesis.

Between them, members of the Information Management Group will be expected to have deep expertise in information technology and advanced reference management, database and programming skills. Membership is also open to anyone willing to help in the identification of end-user requirements, evaluation and testing of search facilities/interfaces or in the ongoing maintenance of databases.

Methods Group

The role of the Methods Group is to support ACORN project groups by providing expertise in methods development or application. This might include, for instance:

  • Advice on best approaches to the design and/or validation of new measurement instruments
  • Internal review of protocols
  • Advice on the application of appropriate statistical methods
  • Advice on how to assess the appropriateness of statistical tests used by others (e.g. in publications of outcome measure validation)
  • Determination of sample sizes
  • Development of internal quality assurance procedures and standards
  • As and when necessary, providing training in basic methods for the design and testing of questionnaires/scales, the selection and application of qualitative research methods, critical appraisal skills and the use of statistical software.

Between them, members of the Methods Group will be expected to have deep expertise the following areas: medical statistics, psychometrics, patient relevant outcomes development, methods for appraising, synthesizing and reporting outcomes data, assessment of scientific rigor in qualitative and quantitative research.

Patient Group

It is critical that the development of a core outcome set involves people who understand what it is like to live with acne. There are no special requirements to join this group other than having acne now or in the past. You don’t need to have sought medical or any other kind of professional help to join this group but you do need to be willing to participate in the activities of at least one of the ACORN project groups.

The idea of a patient only group is to promote the free exchange of ideas and facilitate discussion of issues raised, but not solved, by project groups. For example, how would you define a spot? It is very likely that if we ask ten people with acne and ten experts this question, no two answers will be the same. We need to agree the language we use to describe acne, its symptoms and its impacts before we can begin to develop reproducible ways of measuring the beneficial effects of treatment.

Project groups may approach the patient group from time to time. They might have a specific question or be seeking more patient input into a specific task. The aim is to make sure that the patient perspective informs everything ACORN does.