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EHC Haemophilia Care in Europe 2018
*
Country
(Required.)
Name
Organisation
Email
Phone
Haemophilia Care
Q1. Do you have a National Haemophilia Committee/Council or Co-ordinating group, which includes representatives from the Treatment Centres, Patient Organisation and Ministry of Health?
Yes
No
If yes, does this group have a formal role in advising or organising Haemophilia care nationally?
Yes
No
Q2. Do you have a recognised National Haemophilia Treatment Centre with responsibility for areas such as co-ordination or registry?
Yes
No
If Yes please give details of who is involved in this group (e.g. the name of the Comprehensive Care Centre (CCC) or Haemophilia Treatment Centre (HTC):
Q3. Is there a National Tender for the procurement of Factor Concentrates in your country?
Yes
No
If Yes, please give details of who is involved:
If Yes, is the
patient organisation involved
in the procurement process?
Yes
No
If Yes, are the
clinicians involved
in the procurement process?
Yes
No
Q4. Do you have a system of classification for your Haemophilia Treatment Centres?
Yes
No
If yes, what is the system and who makes the decisions?
Q5. Do you have a National Haemophilia Patient Registry?
If yes, go to question 6; If no, go to question 8.
Yes
No
Q6 Who manages the Registry?
National Organisation
Government
Teaching Hospital
Academic Organisation
Clinician(s)
Haemophilia Patient Organisations
Other
Other (please specify)
Q7. Does the registry record age demographics?
Yes
No
Q8. Do you have Comprehensive Care Centres (CCCs), defined as centres which care for at least 40 persons with severe Haemophilia?
Yes
No
If yes, how many CCC’s are there?
Q9. Do you have Haemophilia Treatment Centres (HTC’s), defined as centres which care for at least 10 persons with severe Haemophilia?
Yes
No
If yes, how many HTC’s are there?
Q10. Which of the following play a significant role in National Decision Making on Haemophilia Care?
Government
Health Ministry
Social Affairs Ministry
Patients
Haemophilia Patient Organisation (Society)
Clinicians
Other (please specify)
Q11. Who is involved in the choice of Haemophilia treatment products?
Government
Health Ministry
Regional Government
Hospital / Comprehensive Care Centre
Patients
Haemophilia Patient Organisation (Society)
Clinicians
Procurement / Tender Committee
Other (please specify)
Q12. Is home treatment available?
(If yes, go to question 13. If no, go to question 15)
Yes
No
Q13. What percentage of people with haemophilia use home treatment?
less than 10%
between 10 and 50 %
between 51 and 75%
between 76 and 100%
Q14. Is treatment delivered to the patient’s home?
Yes
No
Some (please specify)
Q15. Is Prophylaxis (Preventative) Treatment available?
Yes to All
Yes to Children
Yes to Some
No
If Yes to Some (please specify)
Q16. What percentage of children with severe Haemophilia are currently on Prophylaxis?
None
Between 1 and 25%
Between 26 and 50%
Between 51 and 75%
Between 76 and 100%
Q17. What percentage of adults with severe Haemophilia are currently on Prophylaxis?
None
Between 1 and 25%
Between 26 and 50%
Between 51 and 75%
Between 76 and 100%
Q18. What percentage of patients developing inhibitors have access (where appropriate), to immune tolerance therapy (ITT)?
None
Between 1 and 25%
Between 26 and 50%
Between 51 and 75%
Between 76 and 99%
100%
Q19. Are the following specialist services available to people with haemophilia or von Willebrands disease when required as a part of their comprehensive care?
Never
Sometimes
Always
Emergency medicine and acute surgery
Never
Sometimes
Always
Paediatrics
Never
Sometimes
Always
Infectious disease specialists (especially HIV)
Never
Sometimes
Always
Hepatology
Never
Sometimes
Always
Rheumatology
Never
Sometimes
Always
Orthopaedics
Never
Sometimes
Always
Physiotherapy
Never
Sometimes
Always
Dentistry
Never
Sometimes
Always
Obstetrics and Gynaecology
Never
Sometimes
Always
Genetics
Never
Sometimes
Always
Social and psychological support
Never
Sometimes
Always
Pain management
Never
Sometimes
Always
General surgery
Never
Sometimes
Always
Urology
Never
Sometimes
Always
Q20. Number of identified people with Haemophilia A?
People with Haemophilia A
Of these, how many have severe haemophilia A
Q21. Number of identified people with Haemophilia B?
People with Haemophilia B
Of these, how many have severe haemophilia B
Q22. Number of identified people with von Willebrands Disease(vWD)?
People with vWD
Of these, how many have Type III vWD
Q23. Which of the following products are used to treat Haemophilia?
Never
Sometimes
Always
Plasma
Never
Sometimes
Always
Cryoprecipitate
Never
Sometimes
Always
Plasma derived Factor Concentrates
Never
Sometimes
Always
Recombinant Factor Concentrates
Never
Sometimes
Always
Extended Half-Life Factor Concentrates
Never
Sometimes
Always
Q24. Which of the following products are used to treat von Willebrands Disease?
Never
Sometimes
Always
Plasma
Never
Sometimes
Always
Cryoprecipitate
Never
Sometimes
Always
Plasma derived Factor Concentrates
Never
Sometimes
Always
DDAVP (Desmopressin)
Never
Sometimes
Always
Q25. What was the total number of International units of Factor Concentrates used in your country in 2017?
Factor VIII
Factor IX
Q26. Of the total how many International units of Plasma-derived Factor Concentrates were used in your country in 2017?
Factor VIII
Factor IX
Q27. Of the total, how many International units of recombinant Factor Concentrates were used in your country in 2017?
Factor VIII
Factor IX
Q28. Of the total, how many International units of recombinant Extended Half-life Factor Concentrates were used in your country in 2017?
Factor VIII
Factor IX
Hepatitis C
Council of Europe Recommendation: Treatment for hepatitis C with direct-acting antiviral agents should be provided to all people with haemophilia on a high priority basis.
Q29.For HCV do people with haemophilia have access to treatment with direct acting antiviral therapies?
Q30. What is the number of people with haemophilia who still require treatment for hepatitis C ?
Inhibitors
Q31. Number of identified people currently with FVIII inhibitors?
Total currently with FVIII inhibitors
Of the total, how many are high titre (>5BU)?
Of the total, how many occurred in the last year?
Q32. Number of identified people currently with FIX inhibitors?
Total currently with FIX inhibitors
Of the total how many are high titre (>5BU)?
Of the total, how many occurred in the last year?
Q33. What is the current treatment available for patients with inhibitors?
Never
Sometimes
Always
Plasma Derived Bypassing agents (FEIBA)
Never
Sometimes
Always
Recombinant Bypassing agents ( rFVIIa)
Never
Sometimes
Always
Other (please specify):
Never
Sometimes
Always
Q34. Do patients with high titre inhibitors (>5BU) have access to elective surgery?
Yes
No
Current Progress,
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