Summary minutes IPSCSG update meeting Saturday April 12th, 1pm-3pm.
Notes to updates given to ongoing initiatives (minutes by K. M. Boberg and T. H. Karlsen):
1) Michael (michael.trauner@meduniwien.ac.at): Nor-UDCA (Falk) trial update. N=88
included, n=144 screened, aim n=160, interim n=120. Phase 3 planned for next year. A total
of 35 centers contributing, increasing to 40 may increase recruitment rate (average center
contribution 4-5 patients).
2) Cyriel (c.y.ponsioen@amc.uva.nl): Dilstent2 update. N=31 included, aim 100. Ongoing.
3) Cyriel (c.y.ponsioen@amc.uva.nl): Vedolizumab (Takeda) trial. Phase III trial in planing.
4) Cyriel (c.y.ponsioen@amc.uva.nl): Immunochip subphenotype analysis. N=2243 included,
major missing contribution is from the UK side. Database freeze planned for May 2014.
5) Olivier (olivier.chazouilleres@sat.aphp.fr): N=31, Hamburg also recruiting, Calgary and
Miami pending. Aim n=500, 5 years follow-up. Proposals for a substudy on MRI vs. fibroscan.
6) Sun Gou (sj4@sanger.ac.uk): UK/US/German/European GWAS meta-analysis. N=2,871 (n
controls= 12,0129). Multiple new hits, replication planned spring 2014.
7) Mette/Gideon (mette.vesterhus@helse-bergen.no/g.hirschfield@bham.ac.uk):
Prospecitve biobanking, annual sampling, alignment with FICUS, but if possible simple serum
samples annually. ELF is proposed as a new endpoint in PSC at EASL ILC based on Oslo
data. Interest in other serum collections with long follow-up for validation.
8) Johannes (j.e.r.hov@medisin.uio.no): Stool collection – a) annual prospectively to enable
future evaluation of biomarker / prognostic utility of gut microbial shifts, b) cross-sectional “perpost” with preservation solution (NoPSC willing to cover equipment/shipment).
9) David by Tom (d.ellinghaus@ikmb.uni-kiel.de): Immunochip multi-phenotype analysis
(52,262 cases [PSC, ankylosing spondylitis, Crohn’s disease, psoriasis, ulcerative colitis] and
34,213 controls), ongoing, but no results yet, likely ready for presentation at AASLD.
10) Tobias (tobias.weismueller@gmx.de): Statistician to be employed. Several findings
regarding gender and sub-phenotypes. There is US interest in participation. Working group
will prepare paper.
11) Chris (clbowlus@ucdavis.edu): PSC partners patient registry operational.
12) Chris (clbowlus@ucdavis.edu): Exome sequencing studies in African American PSC
patients ongoing.
13) George (gfm26@cam.ac.uk): Pruritus GWAS update. Dedicated PhD student put on project,
data complete.
14) Kirsten (kboberg@ous-hf.no): Survey on general current practice (NOT individual data) for
immunosuppression post OLT in PSC – reminder to send questionnaire back before
Amsterdam meeting (deadline June 15th) for wrap-up. Questionnaire attached separately.
15) Bertus (b.eksteen@ucalgary.ca): Survey on waiting list management of patients with PSC
(general current practice, NOT individual level data). Deadline June 15 th for presentation in
Amsterdam. The questionnaire is done via https://www.surveymonkey.com/s/58MG6BM.
16) Christoph (cschramm@uke.de): European network opportunities – to be elaborated in
Amsterdam.
17) Roger (roger.chapman@ndm.ox.ac.uk): Proposal for study on ”borderline” IgG4 in PSC.
18) Ulrich/Cyriel (u.h.beuers@amc.uva.nl/ c.y.ponsioen@amc.uva.nl): Final program
presentation and approval for the Amsterdam meeting June 23rd and 24th 2014.