Can Technology Help Solve Scleroderma Renal Crisis?

This extraordinary technology has permitted Dr. Hudson to collect enough cases in a very short time to study a rare event. In a recent review, Bost and colleagues discuss the use of Internet technology for drug discovery and development projects with the aim of identifying a cure for tropical infectious diseases.⁵ The authors point out that these “neglected diseases collaborations require a global, secure, multi-organization data-management solution, combined with a platform that facilitates communication and supports collaborative work.” Certainly in rheumatology we have seen a rapid growth in collaborations made possible through the use of Web-based resources. In Canada, the Canadian Scleroderma Research Group makes use of Web-based data entry to collect detailed yearly data on patients with scleroderma from over 15 sites. This has allowed us to collect information on over 1,100 patients in just over five years. Similar collaborations have permitted the collection of data from multiple sites on many of the rheumatic diseases and have fostered an explosion of research in relatively uncommon diseases.

Dr. Hudson’s use of Internet survey technology has been unique in that it has permitted the collection of data on a very rare condition in a short time. This study should serve notice that the rarity of a disease or complication should no longer be an impediment to its study. Research will no longer take place in one community or even in one country now that the Internet offers new possibilities for research.

Dr. Baron is chief of rheumatology at Jewish General Hospital in Montreal.

References

1. Prisant LM, Loebl DH, Mulloy LL. Scleroderma renal crisis. J Clin Hypertens. 2003;5:168-170, 176.
2. Steen VD, Medsger TA, Jr. Long-term outcomes of scleroderma renal crisis. Ann Intern Med. 2000;133: 600-603.
3. Steen VD, Medsger TA Jr, Osial TA Jr, Ziegler GL, Shapiro AP, Rodnan GP. Factors predicting development of renal involvement in progressive systemic sclerosis. Am J Med. 1984; 76:779-786.
4. Hudson M, Baron M, Lo E, Weinfeld J, Furst DE, Khanna D. An international, Web-based, prospective cohort study to determine whether the use of ACE inhibitors prior to the onset of scleroderma renal crisis is associated with worse outcomes-methodology and preliminary results. Int J Rheumatol. 2010;2010. pii: 347402.
5. Bost F, Jacobs RT, Kowalczyk P. Informatics for neglected diseases collaborations. Curr Opin Drug Discov Devel. 2010;13:286-296.