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Internasjonalt samarbeid
Posisjon
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International collaboration
Collaboration with Scandinavian Patient Associations
In 2003 NAFKAM initiated a collaboration with patient associations in Scandinavia on registration of exceptional case histories. For the first few years patient associations within cancer, multiple sclerosis (MS), and asthma-allergy participated. This choice of associations was based on the fact that many persons with cancer, MS or asthma-allergy make use of alternative treatment, and they often experisence serious and chronic disease courses.
During 2007 the collaboration has expanded to include patient associations within rheumatism, migraine, and Chronic Fatigue Syndrome (CFS).
The present collaborators are:
· Kræftens Bekæmpelse, Danmark; Kreftforeningen, Norge (cancer)
· Scleroseforeningen, Danmark; MS-forbundet i Norge (MS)
· Norges Astma- og Allergiforbund (asthma and allergy)
· Giktforeningen, Danmark; Norsk Revmatikerforbund (rheumatism)
· ME/CFS Foreningen, Danmark (CFS)
The patient associations share information about the Exceptional Case History Register through their websites and membership bulletins. The goal is that research based on the register will produce new and useful information about the treatment of different diseases.
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| Some of the participants enjoying the nice weather |
Workshop in Tromsø
In June 2005 an international workshop took place on best and worst cases in health care after patients' use of alternative treatment. The workshop was hosted by the National Research Center in Complementary and Alternative Medicine (NAFKAM) in Tromso, Norway, with participants from USA, Germany, denmark, Sweden and Norway.
This was the first time researchers from different countries were gathered with the purpose of exchanging knowledge and experience of past activities and discussing mutual efforts in the years to come.
The themes of the workshop were:
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Different terms used: best-cases and exceptional patients
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Procedures for registration of best- and worst-cases
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Experience with procedures of medical assessment
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Research projects on best-cases and exceptional patients
The institutions represented at the workshop were the National Cancer Institute (NCI) with its best Case Series (BCS) focusing on cancer; Columbia University - Mailman School of Public Health, with a completed best-case series review and a published report (cancer); Klinikum Nurenberg in Germany with the study group "Unconventional and Complementary Methods in Oncology", focusing on a best-case series (spontaneous remission), clinical reserach and systematic reviewing; Karolinska Institutet in sweden with Best and Worst Case Series: Exploring Exceptional Experiences of Cancer Patients' Use of Complementary and Alternative Therapies; and NAFKAM's Exceptional Case History Register which focuses on serious/chronical illnesses.
The following article was written as a follow-up of the international best-case/worst-case workshop in Tromso.
Exceptional Disease Courses After the Use of CAM: Selection, Registration, Medical Assessment and Research. An International Perspective. Journal of Alternative and Complementary Medicine 2006;7:607-613
Symposium in Edmonton
Research Conference on Complementary and Integrative Medicine was held in Edmonton, Canada in May 2006. RESF, NAFKAM gave a symposium called: Exceptional disease courses defined by patients and experts – registration and research in an international perspective. The symposium focused on the following issues:
1. challenges in defining best and wost cases
2. registration procedures
3. procedures for medcal evaluations
4. research projects within best cases and ESF
The following presentations were given:
o Laila Launsø, NAFKAM: ‘Introduction and background’
o Judith S. Jacobson, Dr.P.H. M.B.A. Columbia University, New York, NY, USA: ‘Research on Best-Cases at the Hufeland Klinik, Germany’
o Colleen O. Lee, RN, MS, AOCN. Office of Cancer Complementary and Alternative Medicine, National Cancer Institute, NIH, Bethesda, MD, USA: ‘Research on Best-Cases at NCI, USA’.
o Brit Drageset, NAFKAM: ‘Registration Procedures of Exceptional Disease Courses in Scandinavia’
o Arne Johan Norheim, NAFKAM: ‘Medical Assessment of Exceptional Disease Courses in Scandinavia’
o Anita Salamonsen, NAFKAM: ‘Exceptional Disease Courses. The Patient Between Different Systems of Treatment.
Focus on exceptional migraine courses after acupuncture or reflexology treatments
In 2008 RESF will have a special focus on patients with migraine. NAFKAM is collaborating with international acupuncture and reflexology organizations with the intention of collecting exceptional migraine courses from Sweden, Norway, Denmark and England.
RESF and Migraine - Information
RESF and Migraine - A Plan of Action
RESF Brochure in English
Last updated September 2007
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