Accessibility of Prophylaxis and On-demand Treatment for Persons With Haemophilia and Other Coagulation Deficiencies
NCT ID: NCT04775888
Last Updated: 2021-05-14
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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UNKNOWN
500 participants
OBSERVATIONAL
2020-09-21
2021-05-21
Brief Summary
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Detailed Description
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The burden related to this disease is probably due to the systematic use of specialized hospital teams such as doctors, nurses for self-injection training for example, and pharmacists. It now seems important to reflect on the evolution of patient pathways that were previously exclusively hospital-centred towards ambulatory care. To do this, various reflections need to be undertaken, including that relating to the accessibility of medication. Indeed, the monthly renewals of these chronic treatments force patients and their caregivers, as well as the parents of children, to go to the hospital, which frequently makes the organization of daily and professional life more cumbersome.
The PHAREO study aims to investigate patients' perception of accessibility to anti-haemophilia drugs in relation to an evaluation of spatial accessibility in order to consider, if necessary, ways of improving the pathway for patients and their caregivers.
The expected benefits of the study are to have: 1) an exhaustive description of the spatial accessibility of the cohort of people living with haemophilia to anti-haemophilia medication within the Auvergne Rhône Alpes region (France) and 2) a better understanding of their needs and their perceptions regarding access to on-demand and prophylactic treatments.
Conditions
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Study Design
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COHORT
PROSPECTIVE
Eligibility Criteria
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Inclusion Criteria
\- Home delivery (not included in the study via hospital pharmacy)
ALL
No
Sponsors
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Hospices Civils de Lyon
OTHER
RESCUe - RESeau Cardiologie Urgence / RESUVal - RESeau des Urgences de la vallée du Rhône
OTHER
Responsible Party
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Principal Investigators
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Laurie Fraticelli, PhD
Role: STUDY_DIRECTOR
RESCUe-RESUVal
Julie Freyssenge, PhD
Role: STUDY_DIRECTOR
RESCUe-RESUVal
Locations
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Centre Hospitalier Albertville-Moûtiers
Albertville, , France
Centre Hospitalier Annecy Genevois
Annecy, , France
Centre Hospitalier d'Ardèche Nord
Annonay, , France
Centre Hospitalier d'Ardèche Méridionale
Aubenas, , France
Centre Hospitalier Henri Mondor d'Aurillac
Aurillac, , France
Centre Hospitalier de Belley
Belley, , France
Centre Hospitalier Fleyriat
Bourg-en-Bresse, , France
Centre hospitalier de Bourg St Maurice
Bourg-Saint-Maurice, , France
Centre Hospitalier Pierre Oudot
Bourgoin, , France
Groupement Hospitalier Est, Hospices Civils de Lyon
Bron, , France
Centre Hospitalier de Chambéry - Hôpital Savoie
Chambéry, , France
Centre Hospitalier Universitaire de Clermont-Ferrand
Clermont-Ferrand, , France
Centre Hospitalier Alpes Léman
Contamine-sur-Arve, , France
Hôpital Nord Ouest de Villefranche-sur-Saône
Gleizé, , France
Centre Hospitalier Universitaire Grenoble - Alpes
La Tronche, , France
Hôpital Edouard herriot, Hospices Civils de Lyon
Lyon, , France
Hôpital de la Croix-Rousse, Hospices Civils de Lyon
Lyon, , France
Centre Hospitalier du Forez
Montbrison, , France
Centre Hospitalier de Montélimar
Montélimar, , France
Hôpital de Montluçon
Montluçon, , France
Centre Hospitalier de Moulins-Yzeure
Moulins, , France
Centre Hospitalier Du Haut Bugey
Oyonnax, , France
Centre Hospitalier des Vals d'Ardeche
Privas, , France
Centre Hospitalier de Roanne
Roanne, , France
Hôpitaux Drôme Nord
Romans-sur-Isère, , France
Pharmacie Centrale, Hospices Civils de Lyon
Saint-Genis-Laval, , France
Centre Hospitalier Intercommunal Sud-Léman Valserine
Saint-Julien-en-Genevois, , France
Centre Hospitalier Uuniversitaire Nord, Saint-Étienne
Saint-Priest-en-Jarez, , France
Hôpitaux du Pays du Mont-Blanc
Sallanches, , France
Hôpital Nord-Ouest Tarare-Grandris
Tarare, , France
Hopitaux du Léman
Thonon-les-Bains, , France
Centre Hospitalier de Valence
Valence, , France
Centre Hospitalier de Vichy
Vichy, , France
Centre Hospitalier Lucien Hussel
Vienne, , France
Countries
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Central Contacts
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Facility Contacts
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Thomas Gailland
Role: primary
Christelle Roch
Role: primary
Sophie Vernardet
Role: primary
Alain Lenoir
Role: primary
Valérie Millot
Role: primary
Marie Geneste
Role: primary
Stéphanie Claveranne
Role: primary
Valérie Chaminant
Role: primary
Clément Beyron
Role: primary
Valérie Chamouard
Role: primary
Elodie Bernard
Role: primary
Anne Boyer
Role: primary
Catherine Diakhate
Role: primary
Magali Bourdelin
Role: primary
Sophie Cerena
Role: primary
Elodie Lanoi
Role: primary
Anne-Claire Uhrès
Role: primary
Hadyl Asfari
Role: primary
Jérémy Rolain
Role: primary
Carole Rimpici
Role: primary
Emmanuel Deligeard
Role: primary
Nathalie Dey
Role: primary
Dominique Quinard
Role: primary
Maud Rossignol
Role: primary
Xavier Cussoneau
Role: primary
Isabelle Carpentier
Role: primary
Alexandra Combes
Role: primary
Jihen Boussetta
Role: primary
Marion Filippi
Role: primary
Christine Vray
Role: primary
Denis Hardelin
Role: primary
Stéphanie Bourget
Role: primary
Jérôme Tavernier
Role: primary
Anne-Sophie Leromain
Role: primary
References
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Leroy V, Freyssenge J, Renard F, Tazarourte K, Negrier C, Chamouard V. Access to treatment among persons with hemophilia: A spatial analysis assessment in the Rhone-Alpes region, France. J Am Pharm Assoc (2003). 2019 Nov-Dec;59(6):797-803. doi: 10.1016/j.japh.2019.07.006. Epub 2019 Aug 9.
Susen S, Gruel Y, Godier A, Harroche A, Chambost H, Lasne D, Rauch A, Roullet S, Fontana P, Goudemand J, de Maistre E, Chamouard V, Wibaut B, Albaladejo P, Negrier C. Management of bleeding and invasive procedures in haemophilia A patients with inhibitor treated with emicizumab (Hemlibra(R) ): Proposals from the French network on inherited bleeding disorders (MHEMO), the French Reference Centre on Haemophilia, in collaboration with the French Working Group on Perioperative Haemostasis (GIHP). Haemophilia. 2019 Sep;25(5):731-737. doi: 10.1111/hae.13817. Epub 2019 Jul 11.
Other Identifiers
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2020PHAREO
Identifier Type: -
Identifier Source: org_study_id
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