European Journal of Pain (1997) 1: 237-239

Bulletin Board The EFIC congress in Barcelona is now successfully behind us and those of us who W

erL‘ (,rtu”ate

enough to attend owe the organizers a debt of gratitude for all their hard work. 1 h(‘P’ *ha* the

many different topics covered at the meeting will stimulate potential authors to subflll t ,,i.*ides to . c,, >,br$; EJP but would also like to remind you that we are keen to have brief reports of mee*i*r,-h

to the Bulletin Board. The main topic this time is a plea from workers on herp I es i;)stfet fle standardization in data recording. If you find this type of item interesting and useful, Pi”“:. HILL know.

FIRST STEPS TOWARDS THE ZOSTER INTERNATIONAL DATA STANDARD (ZI DS)

M . Johnson’ and R. Johnsonb

“Academisch Ziekenhuis Rotterdam, The Netherlands, bBristol Royal Infirmary, UK

Proposals (1,2) to translate current and future data standards used within clinical and research databases into a common format ‘ZIDS’ have met with an enthusiastic response from North American, Asian and European zoster specialists.

to those involved in clinical and rese a ,.& aspects

of zoster. other The principle has been establishcj for . . ill of CI1nlca 1

chronic diseases by the MedIDS fafl , , Inter- data standards such as Cystic Fil~~“S*Sa coa national Data Standard (CFIDS) (t i’O);la*ionaI prehensive standard accepted by Ove* associations and companies for sharing cystic-fibrosis-related infornlL1’ion’ might be developed by using cormn oll fields gt S

existing MedIDS specifications and ,ddi@ ’

peculiar to zoster.

Those who are studying aspects of zoster are from a wide range of scientific and clinical dis- ciplines, and differ in their first langauge. To permit meaningful analysis of data presented from different specialists and centres, it is neces- sary that standards for data collection are agreed and defined.

The specification will allow international understanding of data presented by individual centres and specialties, more appropriate meta- analysis of grouped studies and pooling of data from multi-centre and international cohorts of patients. ZIDS will include acute and chronic aspects of herpes zoster and will define such variables as demographic factors, units of measurement and clinical states such as post- herpetic neuralgia. Other definitions will include, but not be limited to, i tems of interest to prac- titioners of virology, epidemiology, pathology, investigation, therapy, complications, aspects of pain, health economics, etc.

MedIDS, a subgroup of the Intern 21tiOld Oata

Standards Consortium (3), is an oPe’l ,,lU@ Y

. international data standards proJe c’ fofl ed *e

provide a common infrastructure [(]r the col-

lection, storage and manipulation of c.iniCa1 data

including:

Internationally standardized specifiCil*ions Data collection definitions Standard data storage/file fern@ Validated ethical framework for (Ida

owner-

ship and patient privacy Implementation guidelines

Discussion forums Standards committees Experience reports

Electronic clinical data resources Specification documents and software User and solution provider direC*Orles

MedIDS relies on

How is it being achieved? We invite expressions of interest and offers of assistance in reviewing draft proposals of an international multi- disciplinary working group. A completed spe- cification will be published and made available

working groups to define data o terest. The original Cystic Fibrosis currently being supplemented W ith n including Clinical Genetics, and Haemophil ia.

Both nationally and internatioJ1a11y7 ptients

1090-3801/97/030237+03 $12.00/O 0 1997 European Federation of Chapters of the International Association for the Study of Pain

238 BULLETIN BOARD

with VZV (varicella zoster virus) infection and ZIDS will exploit the key features of MedIDS: its complications present to clinicians of many different specialties. There is much variation in demographic, clinical and laboratory data col- lection. There is lack of uniformity in clinical definitions and quantification of symptoms and signs, for example, postherpetic neuralgia, rash healing and pain data. ZIDS will use objective questions rather than applying subjective names and definitions. Data and publications from different disciplines, departments and countries may be compared and, if desired, shared, to allow greater knowledge of all aspects of zoster. This is currently not possible.

Responsible data collection imposes a duty of confidence. It is vitally important that all possible measures to ensure patient and data con- fidentiality are preserved. MedIDS enforces this through a variety of mechanisms:

Developed by specialists in the field Independent of any computer type permitting

data sharing, for example: Access for Windows <---> Excel for Macintosh Hospital information system <--> SAS ZIDS compatible <---> ZIDS compatible

Secure Simple to use and deploy

Self-descriptive ASCII files Sample import/export filters and other soft-

ware freely available Saves money by sharing and reuse of de-

velopment effort In light of the enthusiastic response to pro-

posals to develop ZIDS, we are commencing the standardization process in earnest. The first step

Anonymous patient identification derived from is to gather as many examples of zoster-related

nine simple demographic questions questionnaires in as many different languages as possible. We would ask any reader with examples

Security-oriented underlying data model Private data (for collection and use only by

the patient’s clinician with the clinic) Public data (suitable for submission in an-

onymised form to multicentre studies) Research data (unclassified data items under

development)

Protected data transfer Military strength data encryption at both the

file and individual data item level

In addition, a general ethical framework for the collection and dissemination of confidential clinical data is defined.

Organizations such as VZVRF (Varicella Zos- ter Virus Research Foundation), IHMF (Inter- national Herpes Management Forum) and IASP (International Association for the Study of Pain), as well as smaller single specialty groups, dem- onstrate an international and interdisciplinary with to present and receive data to improve understanding and management of zoster.

Without uniform standards of data collection, this goal is impeded. Collaboration between those involved in zoster research and management can lead to the goal being reached as it has for cystic fibrosis.

of such material to submit copies in confidence to: ZIDS Specialist Working Group, International Data Standards Consortium, Postbus 2102,300O CC Rotterdam, The Netherlands, or by e-mail (as ASCII or an attachment in any common word processing/desktop publishing format) to zids@aol.com

The questionnaires received will be used to build a definitive database of questions com- monly asked in zoster studies. The 50 most com- mon will be standardized by the specialist working group and presented as the 1998 version of the ZIDS standard at the first meeting of the ZIDS specialist working group in Spring 1998.

In addition to submitting questionnaires, any- one who is interested in participating in the specialist working group is invited to put forward their name. All participants will be kept informed of progress through the ZIDS quarterly news- letter and the ZIDS web site (7). We look forward to an enthusiastic and fruitful collaboration.

REFERENCES

1. Johnson MJ, Johnson JRW. Why we Need a Zoster International Data Standard (ZIDS). The Third Inter- national Conference on the Varicella-Zoster Virus, Palm Beach Gardens. March 1997.

European Journal of Pain (1997). 1

239 BULLETIN BOARD

Johnson MJ, Mehta A, Johnson RW. A Proposed Zoster International Data Standard (ZZDS). Proceedings of Pain in Europe, II Congress of the European Federation of IASP Chapters, Barcelona, September 1997. Johnson MJ, Kooij I, Veeze HJ (eds). http://www.idsc.org World Wide Web. Johnson MJ, Mehta A, Veeze HJ, Warwick W. 1st Inter- national Cystic Fibrosis Data Workshop. Israel J Med Sci 1996; 32: S177, S178, S179, S286.

F veeze Johnson MJ. Mehta A, Mull,“’ ..Z J,,JIOZ

HJ. 2nd Inter- , proceedings

I;;;,$ Conference national Cystic Fibrosis i%l(’ “Or! of the 21st European c) ‘p

P

(EWGCGF), Davos, June 1Y) Johnson MJ (ed). http:l/wa.\~.~f,~~g

~~,& Wide Web.

Johnson MJ, Johnson R\?: Ii‘ World Wide Web.