EHC Haemophilia Care in Europe 2018 Survey

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* 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

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* If yes, does this group have a formal role in advising or organising Haemophilia care nationally?

Yes

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* Q2. Do you have a recognised National Haemophilia Treatment Centre with responsibility for areas such as co-ordination or registry?

Yes

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):

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* Q3. Is there a National Tender for the procurement of Factor Concentrates in your country?

Yes

If Yes, please give details of who is involved:

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* If Yes, is the patient organisation involved in the procurement process?

Yes

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* If Yes, are the clinicians involved in the procurement process?

Yes

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* Q4. Do you have a system of classification for your Haemophilia Treatment Centres?

Yes

If yes, what is the system and who makes the decisions?

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* Q5. Do you have a National Haemophilia Patient Registry?
If yes, go to question 6; If no, go to question 8.

Yes

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* Q6 Who manages the Registry?

National Organisation

Government

Teaching Hospital

Academic Organisation

Clinician(s)

Haemophilia Patient Organisations

Other

Other (please specify)

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* Q7. Does the registry record age demographics?

Yes

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* Q8. Do you have Comprehensive Care Centres (CCCs), defined as centres which care for at least 40 persons with severe Haemophilia?

Yes

If yes, how many CCC’s are there?

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* Q9. Do you have Haemophilia Treatment Centres (HTC’s), defined as centres which care for at least 10 persons with severe Haemophilia?

Yes

If yes, how many HTC’s are there?

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* 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)

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* 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)

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* Q12. Is home treatment available?
(If yes, go to question 13. If no, go to question 15)

Yes

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* 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%

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* Q14. Is treatment delivered to the patient’s home?

Yes

Some (please specify)

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* Q15. Is Prophylaxis (Preventative) Treatment available?

Yes to All

Yes to Children

Yes to Some

If Yes to Some (please specify)

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* 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%

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* 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%

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* 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%

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* 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	Emergency medicine and acute surgery Never	Emergency medicine and acute surgery Sometimes	Emergency medicine and acute surgery Always
Paediatrics	Paediatrics Never	Paediatrics Sometimes	Paediatrics Always
Infectious disease specialists (especially HIV)	Infectious disease specialists (especially HIV) Never	Infectious disease specialists (especially HIV) Sometimes	Infectious disease specialists (especially HIV) Always
Hepatology	Hepatology Never	Hepatology Sometimes	Hepatology Always
Rheumatology	Rheumatology Never	Rheumatology Sometimes	Rheumatology Always
Orthopaedics	Orthopaedics Never	Orthopaedics Sometimes	Orthopaedics Always
Physiotherapy	Physiotherapy Never	Physiotherapy Sometimes	Physiotherapy Always
Dentistry	Dentistry Never	Dentistry Sometimes	Dentistry Always
Obstetrics and Gynaecology	Obstetrics and Gynaecology Never	Obstetrics and Gynaecology Sometimes	Obstetrics and Gynaecology Always
Genetics	Genetics Never	Genetics Sometimes	Genetics Always
Social and psychological support	Social and psychological support Never	Social and psychological support Sometimes	Social and psychological support Always
Pain management	Pain management Never	Pain management Sometimes	Pain management Always
General surgery	General surgery Never	General surgery Sometimes	General surgery Always
Urology	Urology Never	Urology Sometimes	Urology Always

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* Q20. Number of identified people with Haemophilia A?

People with Haemophilia A

Of these, how many have severe haemophilia A

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* Q21. Number of identified people with Haemophilia B?

People with Haemophilia B

Of these, how many have severe haemophilia B

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* Q22. Number of identified people with von Willebrands Disease(vWD)?

People with vWD

Of these, how many have Type III vWD

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* Q23. Which of the following products are used to treat Haemophilia?

	Never	Sometimes	Always
Plasma	Plasma Never	Plasma Sometimes	Plasma Always
Cryoprecipitate	Cryoprecipitate Never	Cryoprecipitate Sometimes	Cryoprecipitate Always
Plasma derived Factor Concentrates	Plasma derived Factor Concentrates Never	Plasma derived Factor Concentrates Sometimes	Plasma derived Factor Concentrates Always
Recombinant Factor Concentrates	Recombinant Factor Concentrates Never	Recombinant Factor Concentrates Sometimes	Recombinant Factor Concentrates Always
Extended Half-Life Factor Concentrates	Extended Half-Life Factor Concentrates Never	Extended Half-Life Factor Concentrates Sometimes	Extended Half-Life Factor Concentrates Always

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* Q24. Which of the following products are used to treat von Willebrands Disease?

	Never	Sometimes	Always
Plasma	Plasma Never	Plasma Sometimes	Plasma Always
Cryoprecipitate	Cryoprecipitate Never	Cryoprecipitate Sometimes	Cryoprecipitate Always
Plasma derived Factor Concentrates	Plasma derived Factor Concentrates Never	Plasma derived Factor Concentrates Sometimes	Plasma derived Factor Concentrates Always
DDAVP (Desmopressin)	DDAVP (Desmopressin) Never	DDAVP (Desmopressin) Sometimes	DDAVP (Desmopressin) Always

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* Q25. What was the total number of International units of Factor Concentrates used in your country in 2017?

Factor VIII

Factor IX

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* Q26. Of the total how many International units of Plasma-derived Factor Concentrates were used in your country in 2017?

Factor VIII

Factor IX

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* Q27. Of the total, how many International units of recombinant Factor Concentrates were used in your country in 2017?

Factor VIII

Factor IX

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* 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

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* 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?

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* Q30. What is the number of people with haemophilia who still require treatment for hepatitis C ?

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* 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?

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* 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?

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* Q33. What is the current treatment available for patients with inhibitors?

	Never	Sometimes	Always
Plasma Derived Bypassing agents (FEIBA)	Plasma Derived Bypassing agents (FEIBA) Never	Plasma Derived Bypassing agents (FEIBA) Sometimes	Plasma Derived Bypassing agents (FEIBA) Always
Recombinant Bypassing agents ( rFVIIa)	Recombinant Bypassing agents ( rFVIIa) Never	Recombinant Bypassing agents ( rFVIIa) Sometimes	Recombinant Bypassing agents ( rFVIIa) Always
Other (please specify):	Other (please specify): Never	Other (please specify): Sometimes	Other (please specify): Always

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* Country

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* Name

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* Organisation

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* Email

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* Phone

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* Haemophilia CareQ1. 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?

Question Title

* If yes, does this group have a formal role in advising or organising Haemophilia care nationally?

Question Title

* Q2. Do you have a recognised National Haemophilia Treatment Centre with responsibility for areas such as co-ordination or registry?

Question Title

* Q3. Is there a National Tender for the procurement of Factor Concentrates in your country?

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* If Yes, is the patient organisation involved in the procurement process?

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* If Yes, are the clinicians involved in the procurement process?

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* Q4. Do you have a system of classification for your Haemophilia Treatment Centres?

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* Q5. Do you have a National Haemophilia Patient Registry?If yes, go to question 6; If no, go to question 8.

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* Q6 Who manages the Registry?

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* Q7. Does the registry record age demographics?

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* Q8. Do you have Comprehensive Care Centres (CCCs), defined as centres which care for at least 40 persons with severe Haemophilia?

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* Q9. Do you have Haemophilia Treatment Centres (HTC’s), defined as centres which care for at least 10 persons with severe Haemophilia?

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* Q10. Which of the following play a significant role in National Decision Making on Haemophilia Care?

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* Q11. Who is involved in the choice of Haemophilia treatment products?

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* Q12. Is home treatment available?(If yes, go to question 13. If no, go to question 15)

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* Q13. What percentage of people with haemophilia use home treatment?

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* Q14. Is treatment delivered to the patient’s home?

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* Q15. Is Prophylaxis (Preventative) Treatment available?

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* Q16. What percentage of children with severe Haemophilia are currently on Prophylaxis?

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* Q17. What percentage of adults with severe Haemophilia are currently on Prophylaxis?

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* Q18. What percentage of patients developing inhibitors have access (where appropriate), to immune tolerance therapy (ITT)?

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* Q19. Are the following specialist services available to people with haemophilia or von Willebrands disease when required as a part of their comprehensive care?

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* Q20. Number of identified people with Haemophilia A?

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* Q21. Number of identified people with Haemophilia B?

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* Q22. Number of identified people with von Willebrands Disease(vWD)?

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* Q23. Which of the following products are used to treat Haemophilia?

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* Q24. Which of the following products are used to treat von Willebrands Disease?

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* Q25. What was the total number of International units of Factor Concentrates used in your country in 2017?

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* Q26. Of the total how many International units of Plasma-derived Factor Concentrates were used in your country in 2017?

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* Q27. Of the total, how many International units of recombinant Factor Concentrates were used in your country in 2017?

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* Q28. Of the total, how many International units of recombinant Extended Half-life Factor Concentrates were used in your country in 2017?

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* Hepatitis CCouncil 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?

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* Q30. What is the number of people with haemophilia who still require treatment for hepatitis C ?

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* InhibitorsQ31. Number of identified people currently with FVIII inhibitors?

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* Q32. Number of identified people currently with FIX inhibitors?

* 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?

* Q5. Do you have a National Haemophilia Patient Registry?
If yes, go to question 6; If no, go to question 8.

* Q12. Is home treatment available?
(If yes, go to question 13. If no, go to question 15)

* 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?

* Inhibitors

Q31. Number of identified people currently with FVIII inhibitors?