6 -Public Involvement
|
Quality
Management |
Training and
Education |
Public
Involvement |
| Description | ||
|---|---|---|
Name |
OKIDS - Medicines for Children Research Organization Austria |
|
| Involvement of patients, parents or their organisations in the protocol design | Yes | refer to 6.3 |
| Involvement of patients, parents or their organisations in creating the protocol info package | Yes | refer to 6.3 |
| Involvement of patients, parents or their organisations in prioritisation of needs for Clinical Trials | Yes | Development of a forum of parent organisations and representatives for collaboration in the following aspects - strategic development of OKIDS - assessment therapeutic needs - prioritization of medicine developments There is a close collaboration established between OKIDS-experts and the parent/patient organisations as listed hereunder. These activities include the respective expert’s participation in the yearly conferences of the parent/patient organisations, presentation and discussion of current study results as well as the involvement of parent/patient advocates in the planning of future studies, the design of study documents and the definition of needs for future trials. Ass. Prof.Dr. Florian Lagler is the expert contact for: 1) Society for Mucopolysaccharidoses (MPS) Michaela Weigl, 4075 Finklham 90, Tel: 07249 / 47795, Mobil: 0664 / 522 0 682, michaela.weigl@mps-austria.at 2) Self support and help group for Pompe Disease (Glycogen Storage Diseas Typ 2)- Austria Heidi Gmeiner, Zoll 86, A-6861 Alberschwende, Telefon: +43 (0) 5579 83184, Mobil: +43 (0) 650 22430 05, E-Mail: morbus.pompe@aon.at 3) Austrian Society for M. Gaucher (ÖGG – Österreichische Gaucher Gesellschaft) Pichler Roman, Tumlerstr. 4, 4232 Hagenberg 4) Austrian Society for Inherited Metabolic Diseases Indications (Galactosemias and Phenylketonuria) Herr Florian Barton, Ottakringer Straße 258-260/Top 20, 1160 Wien 5) Association for Tay Sachs Disease and other rare metabolic diseases (Verein Hand in Hand gegen Tay Sachs und ähnliche seltene Stoffwechselkrankheiten, incl. Vacterl Syndrom) Obfrau Eva Irran, eva.irran@gmx.at, http://www.tay-sachs.net Prof.Dr. Ruth Ladenstein is the expert contact for: Dachverband der österreichischen Kinderkrebshilfe Director: Anita Kienesberger Österreichische Kinder-Krebs-Hilfe 1090 Wien, Borschkegasse 1/7 Tel: +43 (0) 1 402 88 99 - 14 | Fax: +43 (0) 1 402 88 99 - 10 www.kinderkrebshilfe.at a.o. Prof.Dr. Christoph Male is the expert contact for: Österreichische Haemophiliegesellschaft www.bluter.at Georg Seiler, ÖHG-Sekretariat: Tel.: +43(1)59 537-33 seiler@bluter.at Herzkinder Österreich www.herzkinder.at Michaela Altendorfer - Präsidentin Telefon: +43 (0)664 520 09 31 Email: m.altendorfer@herzkinder.at |