Patients united: Bringing the patient voice to genetics research

Patients have always been at the heart of the Cure Parkinson ’s Trust (CPT), co-founded by four individuals with PD in 2005. Today it has 16,000 forum members with Parkinson’s disease (PD), about 2,000 PD patients in clinical trials, and approximately 1,500 PD patients attending the World Parkinson’s Congress.   Together with several external research and fundraising institutes, the charity brings together all the personal experience and scientific expertise needed to propel its patient-centric mission to find a cure. “Having a broad range of personal and professional expertise available enables CPT to include the right advocates with the right projects to ensure the greatest impact of the patient voice,” says Helen Matthews, Deputy CEO of CPT. “This is vital.” It engages with this community of PD patients to further genetic research in a number of ways. For example, the CPT Twitter account has 15k followers, with tweets combining posts about clinical and scientific breakthroughs, conferences, and clinical trial initiatives.    A related Twitter account, ScienceofParkinsons, is managed by CPT ’s Deputy Director of Research Dr Simon Stott and gives updates on the latest research in the field. Although much more scientific than CPT’s primary Twitter, it has many contributions from PD patients and professional scientists who have PD – the latter of whom CPT refer to as “Parkinson’ s advocates.” Patients steering research“We are passionate and ...
Source: EyeForPharma - Category: Pharmaceuticals Authors: Source Type: news