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Research

Research into rare dis­eases improves treat­ment stand­ards and the qual­ity of life for patients.

The more people take part in a clin­ic­al study, the more mean­ing­ful the study res­ults become.

Giv­en the small num­ber of people affected—around 3,000 in Switzerland—research into these dis­eases is not a pri­or­ity for medi­cine and phar­ma­ceut­ic­al companies.

The Swiss SLE Cohort Study

When a research pro­ject is launched, it is import­ant that many people affected take part in the project.

The Swiss Cohort Study for Sys­tem­ic Lupus Eryth­em­atosus col­lects labor­at­ory res­ults from patients with SLE over the long term with their con­sent. The aim is to bet­ter under­stand the course of lupus and the dis­ease-caus­ing mechanisms. 

In addi­tion to data col­lec­tion without act­ive patient involve­ment, there are also so-called double-blind stud­ies, for example, a study on the effect­ive­ness of the sub­stance Upa­da­citin­ib. Half of the par­ti­cipants are treated with the sub­stance Upa­da­citin­ib. The oth­er half receives a placebo. Double-blind means that neither patients nor med­ic­al pro­fes­sion­als know who receives the sub­stance and who receives the placebo. All par­ti­cipants were informed about the study in advance and signed a con­sent form. 

Mem­bers can find a detailed report on the SLE Cohort Study in the magazine «lupus» 1/​2015 on pages 6–9.

The lar­ger the num­ber of par­ti­cipants in clin­ic­al stud­ies, the more com­pre­hens­ive and mean­ing­ful the study res­ults. This enables the devel­op­ment of increas­ingly effect­ive medi­cines against lupus. Ulti­mately, all affected indi­vidu­als bene­fit from these studies. 
Lupus Suisse recom­mends that all lupus patients par­ti­cip­ate in the SLE Cohort Study. Please dis­cuss this with your rheum­at­o­lo­gist or immunologist. 

Pro­Rar­is as a polit­ic­al representative 

To be more strongly recog­nised in pub­lic and polit­ic­al spheres, patient organ­isa­tions for rare dis­eases joined forces in the asso­ci­ation Pro­Rar­is on 26 June 2010.

As a patient organ­isa­tion, lupus suisse is a mem­ber of Pro­Rar­is Switzer­land. Every year, Pro­Rar­is Switzer­land organ­ises a con­fer­ence for the Inter­na­tion­al Rare Dis­ease Day. 

The mis­sion of Pro­Rar­is Switzer­land:

  • strength­en­ing cooper­a­tion between stake­hold­ers in the field of rare diseases
  • sup­port­ing self-organ­isa­tion among ser­vice pro­viders, those affected and oth­er stakeholders
  • recog­ni­tion of ref­er­ence centres and centres for rare diseases
  • recog­ni­tion of registers for rare diseases
  • pro­mot­ing inter­na­tion­al links in care and in ref­er­ence networks
  • dis­cus­sion of research and the reim­burse­ment of services
  • cre­at­ing a point of con­tact for authorities

Source: kosek

kosek – Nation­al Coordin­a­tion for Rare Diseases

What is kosek?

The Nation­al Coordin­a­tion for Rare Dis­eases (kosek) is a coordin­a­tion plat­form to improve the care situ­ation for people affected by rare dis­eases. To this end, kosek car­ries out pro­jects with stake­hold­ers in health­care and always involves those affected via their patient organisations. 

At kosek, the fol­low­ing tasks are the main focus:

  • strength­en­ing cooper­a­tion between stake­hold­ers in the field of rare diseases
  • sup­port­ing self-organ­isa­tion among ser­vice pro­viders, those affected and oth­er stakeholders
  • recog­ni­tion of ref­er­ence centres and centres for rare diseases
  • recog­ni­tion of registers for rare diseases
  • pro­mot­ing inter­na­tion­al links in care and in ref­er­ence networks
  • dis­cus­sion of research and the reim­burse­ment of services
  • cre­at­ing a point of con­tact for authorities

Source: Pro­Rar­is – Alli­ance for Rare Dis­eases Switzerland