Lymfompatienter sökes
Den internationella paraplyorganisationen Lymphoma Coalition Europe (LCE) har i följande mail bett Blodcancerförbundet om hjälp med att hitta patienter berörda av två ovanliga lymfomsjukdomar
Dear Blodcancerförbundet,
As you know LCE is partnering with EMA to get lymphoma patients perspective included in their scientific advice procedures, for assessment of new medicines, or clinical trials. Currently we are looking for patients to get involved in the next two assessments, that will take place on March 5th 2020 at EMA offices in Amsterdam.
Help us to identify:
- Two patients to discuss a medicine intended for the treatment of CD30-positive peripheral T-cell lymphomas (PTCL)
- Two patients with experience of Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN)
In the following links you will find a leaflet and a video on how patients are involved at the EMA.
Scientific advice is when a company developing a medicine requests scientific regulatory advice for their development programme – they ask (and answer) a series of questions on any aspect from the manufacture of a medicine to clinical studies and regulatory aspects and the Scientific Advice Working Party (SAWP) responds to the company’s answers and decide either to meet the company or to respond in writing only.
What are the next steps once we identify the patients willing to participate?
All participants are required to complete a confidentiality agreement and declare any competing interests, which are assessed prior to formal invitation. It is for this reason that we begin to look for a patient as early as possible as this part can take a certain amount of time.
After they submit their declaration of interest form – I send their name and contact details to my colleagues responsible for scientific advice procedures. They will contact the patient to explain more about where their input would be needed, they will send the documents and explain which areas to focus on.
Normally, in the case of a face to face meeting, the participant can either attend the meeting in person or connect by telephone or send comments in writing. All costs are covered by EMA (travel, accommodation).
I will be looking forward to hearing from you soon. Hopefully we will identify patients willing to join these scientific advice procedures, as this is a very important piece of work for our community! To get patients listened in decision-making.
Best regards, 
Lorna Warwick
CEO, Lymphoma Coalition
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