Guest guest Posted August 3, 2006 Report Share Posted August 3, 2006 Yes - you're right Dave - I've had the PSC blues for a long time. I'm honoured that my message elicited a response on your well-known creative side in an artistic direction. A man of many parts! While your poem might not win a poetry prize it very neatly encapsulates most of the major questions in this very frustrating disease. I wouldn't be surprised if you could play the guitar and sing - in which case you could release PSC blues on a CD. (PSC Partners Medical Ditties Inc.). We probably have hidden talent in the group and could form a backing choir. More seriously I wonder why any young hepatologist would want to be drawn into researching PSC and PBC. Fortunately there are some. What may not be realised is that much of the medical literature on PSC which we read today is a rehash of articles published in the 1980's and 90's which I was busy reading in that medical library. I made copious notes on cards - 200 of them, which I still have; and reading them again it's pretty clear that we haven't gone very far. One of the major themes of those decades was the great promise held out by Urso. We're still waiting for the fulfilment. Ivor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2006 Report Share Posted August 4, 2006 Hi Ivor; Trust me, you would not want to either hear me sing or play the guitar! I think part of the problem with the lack of progress in PSC over the last 20 - 3O years is that there hasn't been a large enough pool of patients and non-affected family members to study in one centralized database. Much of the recent progress in inflammatory bowel diseases (in terms of its genetic basis at least) has been because of large-scale projects with large numbers of patients, facilitating genome-wide searches for susceptibility genes. They are now beginning to identify sub-groups of IBD patients with different susceptibility genes. This promises the opportunity to begin to treat different patients with different therapies, based on genetic information, see for example: ___________________ Expert Opin Pharmacother. 2006 Aug;7(12):1591-602. Genetic variants and the risk of Crohn's disease: what does it mean for future disease management? Torok HP, Glas J, Lohse P, Folwaczny C. Department of Surgery Innenstadt, Ludwig-Maximilians University, Nussbaumstrasse 20, D-80336 Munich, Germany. Helga.Toeroek@...- muenchen.de Genetic research in inflammatory bowel disease, especially in Crohn's disease, has made significant progress during recent years. There have been > 10 total genome scans that have been performed, and susceptibility loci on several chromosomes have been identified. Together with candidate gene studies, these scans have led to the identification of several susceptibility genes, with CARD15 being the most important. These genetic data have already provided important insights into the pathophysiology of inflammatory bowel disease and are stimulating future research. On the other hand, genotype-phenotype associations have illustrated the heterogenic nature of the disease. Although the clinical application of this knowledge is so far limited, there is significant optimism that an individual management of patients based on genetic data will be possible in the near future. PMID: 16872262 _____________________ PSC will probably prove to be a mixture of different diseases with different causes ... perhaps with different susceptibility genes, different environmental triggers, and different autoimmune involvement? Already we see sub-groups, for example with elevated IgG4 (which may respond to corticosteroids?), with overlap with autoimmune hepatitis, or with only small-duct involvement. This is why I am excited about the STOPSC registry. It may eventually permit identifying several different PSC susceptibility genes with treatment taylored to each type. I am a firm believer that if IBD has a genetic basis (albeit complex), then PSC/IBD must also have a genetic basis, and understanding the genes involved will eventually point to the underlying pathophysiology. Best regards, Dave " Muddy " (father of (21); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2006 Report Share Posted August 4, 2006 Hi Ivor; Trust me, you would not want to either hear me sing or play the guitar! I think part of the problem with the lack of progress in PSC over the last 20 - 3O years is that there hasn't been a large enough pool of patients and non-affected family members to study in one centralized database. Much of the recent progress in inflammatory bowel diseases (in terms of its genetic basis at least) has been because of large-scale projects with large numbers of patients, facilitating genome-wide searches for susceptibility genes. They are now beginning to identify sub-groups of IBD patients with different susceptibility genes. This promises the opportunity to begin to treat different patients with different therapies, based on genetic information, see for example: ___________________ Expert Opin Pharmacother. 2006 Aug;7(12):1591-602. Genetic variants and the risk of Crohn's disease: what does it mean for future disease management? Torok HP, Glas J, Lohse P, Folwaczny C. Department of Surgery Innenstadt, Ludwig-Maximilians University, Nussbaumstrasse 20, D-80336 Munich, Germany. Helga.Toeroek@...- muenchen.de Genetic research in inflammatory bowel disease, especially in Crohn's disease, has made significant progress during recent years. There have been > 10 total genome scans that have been performed, and susceptibility loci on several chromosomes have been identified. Together with candidate gene studies, these scans have led to the identification of several susceptibility genes, with CARD15 being the most important. These genetic data have already provided important insights into the pathophysiology of inflammatory bowel disease and are stimulating future research. On the other hand, genotype-phenotype associations have illustrated the heterogenic nature of the disease. Although the clinical application of this knowledge is so far limited, there is significant optimism that an individual management of patients based on genetic data will be possible in the near future. PMID: 16872262 _____________________ PSC will probably prove to be a mixture of different diseases with different causes ... perhaps with different susceptibility genes, different environmental triggers, and different autoimmune involvement? Already we see sub-groups, for example with elevated IgG4 (which may respond to corticosteroids?), with overlap with autoimmune hepatitis, or with only small-duct involvement. This is why I am excited about the STOPSC registry. It may eventually permit identifying several different PSC susceptibility genes with treatment taylored to each type. I am a firm believer that if IBD has a genetic basis (albeit complex), then PSC/IBD must also have a genetic basis, and understanding the genes involved will eventually point to the underlying pathophysiology. Best regards, Dave " Muddy " (father of (21); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2006 Report Share Posted August 4, 2006 Hi Ivor; Trust me, you would not want to either hear me sing or play the guitar! I think part of the problem with the lack of progress in PSC over the last 20 - 3O years is that there hasn't been a large enough pool of patients and non-affected family members to study in one centralized database. Much of the recent progress in inflammatory bowel diseases (in terms of its genetic basis at least) has been because of large-scale projects with large numbers of patients, facilitating genome-wide searches for susceptibility genes. They are now beginning to identify sub-groups of IBD patients with different susceptibility genes. This promises the opportunity to begin to treat different patients with different therapies, based on genetic information, see for example: ___________________ Expert Opin Pharmacother. 2006 Aug;7(12):1591-602. Genetic variants and the risk of Crohn's disease: what does it mean for future disease management? Torok HP, Glas J, Lohse P, Folwaczny C. Department of Surgery Innenstadt, Ludwig-Maximilians University, Nussbaumstrasse 20, D-80336 Munich, Germany. Helga.Toeroek@...- muenchen.de Genetic research in inflammatory bowel disease, especially in Crohn's disease, has made significant progress during recent years. There have been > 10 total genome scans that have been performed, and susceptibility loci on several chromosomes have been identified. Together with candidate gene studies, these scans have led to the identification of several susceptibility genes, with CARD15 being the most important. These genetic data have already provided important insights into the pathophysiology of inflammatory bowel disease and are stimulating future research. On the other hand, genotype-phenotype associations have illustrated the heterogenic nature of the disease. Although the clinical application of this knowledge is so far limited, there is significant optimism that an individual management of patients based on genetic data will be possible in the near future. PMID: 16872262 _____________________ PSC will probably prove to be a mixture of different diseases with different causes ... perhaps with different susceptibility genes, different environmental triggers, and different autoimmune involvement? Already we see sub-groups, for example with elevated IgG4 (which may respond to corticosteroids?), with overlap with autoimmune hepatitis, or with only small-duct involvement. This is why I am excited about the STOPSC registry. It may eventually permit identifying several different PSC susceptibility genes with treatment taylored to each type. I am a firm believer that if IBD has a genetic basis (albeit complex), then PSC/IBD must also have a genetic basis, and understanding the genes involved will eventually point to the underlying pathophysiology. Best regards, Dave " Muddy " (father of (21); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
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