23 Einträge gefunden

1. The effect of a virtual child disease management programme on burden and social adjustment of caregivers of children with coagulation factor deficiencies

   1. Rambod, Masoume
   2. Pasyar, Nilofar
   3. Irannejad Parizi, Fatemeh
   4. Edraki, Mitra
   5. Khair, Kate
   6. von Mackensen, Sylvia

   2023 - Forschungsinformationssystem des UKE - frei zugänglich
2. Clinical phenotype, fibrinogen supplementation and health-related quality of life in patients with afibrinogenemia

   1. Casini, Alessandro
   2. von Mackensen, Sylvia
   3. Santoro, Cristina
   4. Djambas Khayat, Claudia
   5. Belhani, Meriem
   6. Ross, Cecil
   7. Dorgalaleh, Akbar

   2021 - Forschungsinformationssystem des UKE
3. Cross-Sectional and Longitudinal Construct Validity of the Generic KINDL-A(dult)B(rief) Questionnaire in Adults with Thrombophilia or with Hereditary and Acquired Bleeding Disorders

   1. Neuner, Bruno
   2. von Mackensen, Sylvia
   3. Kiesau, Bettina
   4. Krampe, Henning
   5. McCarthy, William J
   6. Reinke, Sarah
   7. Kowalski, Dorothee

   2021 - Forschungsinformationssystem des UKE - frei zugänglich
4. Impact of COVID-19 Pandemic on Medical Care of Patients with Inherited Bleeding Disorders, Auswirkungen der COVID-19 Pandemie auf die medizinische Versorgung von Patienten mit angeborenen Blutungsneigungen

   1. Olivieri, Martin
   2. Halimeh, Susan
   3. Wermes, Cornelia
   4. Hassenpflug, Wolf
   5. Holstein, Katharina
   6. von Mackensen, Sylvia

   2021 - Forschungsinformationssystem des UKE - frei zugänglich
5. Health-related quality of life and health status in adolescent and adult people with haemophilia A without factor VIII inhibitors-A non-interventional study

   1. Oldenburg, Johannes
   2. Tran, Huyen
   3. Peyvandi, Flora
   4. Núñez, Ramiro
   5. Trask, Peter
   6. Chebon, Sammy
   7. Mahlangu, Johnny N

   2021 - Forschungsinformationssystem des UKE - frei zugänglich
6. Cross-cultural adaptation and validation of Haem-A-QoL in Côte d'Ivoire

   1. Lambert, Catherine
   2. Meité, N'Dogomo
   3. Sanogo, Ibrahima
   4. Lobet, Sébastien
   5. von Mackensen, Sylvia
   6. Hermans, Cedric

   2020 - Forschungsinformationssystem des UKE
7. Evaluation of the U.S. Adherence Questionnaires VERITAS-PRO and VERITAS-PRN for Use in Patients with Hemophilia in the German Healthcare System

   1. von Mackensen, Sylvia
   2. Douma, Yves
   3. Halimeh, Susan

   2020 - Forschungsinformationssystem des UKE
8. Heavy menstrual bleeding in women with inherited bleeding disorders

   1. Djambas Khayat, Claudia
   2. Gouider, Emna
   3. von Mackensen, Sylvia
   4. Abdul Kadir, Rezan

   2020 - Forschungsinformationssystem des UKE
9. Challenges and key lessons from the design and implementation of an international haemophilia registry supported by a pharmaceutical company

   1. Hay, Charles R M
   2. Shima, Midori
   3. Makris, Michael
   4. Jiménez-Yuste, Victor
   5. Oldenburg, Johannes
   6. Fischer, Kathelijn
   7. Iorio, Alfonso

   2020 - Forschungsinformationssystem des UKE
10. BAY 81-8973 prophylaxis and pharmacokinetics in haemophilia A:Interim results from the TAURUS study

    1. Santoro, Cristina
    2. Fuh, Beng
    3. Le, Phu Quoc
    4. Maes, Philip
    5. Berrueco, Rubén
    6. Mingot-Castellano, Eva Maria
    7. von Mackensen, Sylvia

    2020 - Forschungsinformationssystem des UKE
11. Health-related quality of life and caregiver burden of emicizumab in children with haemophilia A and factor VIII inhibitors-Results from the HAVEN 2 study

    1. Mancuso, Maria Elisa
    2. Mahlangu, Johnny
    3. Sidonio, Robert
    4. Trask, Peter
    5. Uguen, Marianne
    6. Chang, Tiffany
    7. Shima, Midori

    2020 - Forschungsinformationssystem des UKE
12. Determining meaningful health-related quality-of-life improvement in persons with haemophilia A using the Haemophilia Quality of Life Questionnaire for Adults (Haem-A-QoL)

    1. von Mackensen, Sylvia
    2. Catalani, Olivier
    3. Asikanius, Elina
    4. Paz-Priel, Ido
    5. Lehle, Michaela
    6. Trask, Peter

    2020 - Forschungsinformationssystem des UKE
13. Impact of COVID-19 pandemic on mental health of patients with inherited bleeding disorders in Germany

    1. von Mackensen, Sylvia
    2. Halimeh, Susan
    3. Siebert, Manuela
    4. Wermes, Cornelia
    5. Hassenpflug, Wolf
    6. Holstein, Katharina
    7. Olivieri, Martin

    2020 - Forschungsinformationssystem des UKE
14. Health-Related Quality of Life, Treatment Satisfaction and Adherence Outcomes of Haemophilia Patients Living in a German Rural Region

    1. von Mackensen, Sylvia
    2. Schleicher, Christian
    3. Heine, Sabine
    4. Graf, Norbert
    5. Eichler, Hermann

    2020 - Forschungsinformationssystem des UKE
15. The impact of bleeding disorders on the socioeconomic status of adult patients. Results of a comparative single centre cohort study

    1. Holstein, Katharina
    2. von Mackensen, Sylvia
    3. Bokemeyer, Carsten
    4. Langer, Florian

    2018 - Forschungsinformationssystem des UKE
16. Caregiver burden in haemophilia: Results from a single UK centre

    1. Khair, Kate
    2. von Mackensen, Sylvia

    2017 - Forschungsinformationssystem des UKE
17. Health-Related Quality of Life in Children and Adolescents with Hereditary Bleeding Disorders and in Children and Adolescents with Stroke: Cross-Sectional Comparison to Siblings and Peers

    1. Neuner, Bruno
    2. von Mackensen, Sylvia
    3. Holzhauer, Susanne
    4. Funk, Stephanie
    5. Klamroth, Robert
    6. Kurnik, Karin
    7. Krümpel, Anne

    2016 - Forschungsinformationssystem des UKE - frei zugänglich
18. Increased burden on caregivers of having a child with haemophilia complicated by inhibitors

    1. Lindvall, Karin
    2. von Mackensen, Sylvia
    3. Elmståhl, Sölve
    4. Khair, Kate
    5. Stain, Ann Marie
    6. Ljung, Rolf
    7. Berntorp, Erik

    2014 - Forschungsinformationssystem des UKE
19. Linguistic and psychometric validation of the MSSS-88 questionnaire for patients with multiple sclerosis and spasticity in Germany

    1. Henze, Thomas
    2. von Mackensen, Sylvia
    3. Lehrieder, Gerald
    4. Zettl, Uwe K
    5. Pfiffner, Carmen
    6. Flachenecker, Peter

    2014 - Forschungsinformationssystem des UKE - frei zugänglich
20. ITP-QoL questionnaire for children with immune thrombocytopenia: Italian version validation's

    1. Giordano, Paola
    2. Lassandro, Giuseppe
    3. Giona, Fiorina
    4. Jankovic, Momcilo
    5. Nardi, Margherita
    6. Nobili, Bruno
    7. Notarangelo, Lucia Dora

    2014 - Forschungsinformationssystem des UKE