Detail Article

Informations générales (source: ClinicalTrials.gov)

Numéro NCT

NCT04775888 Statut inconnu

Titre

Prophylaxis and On-demand Treatment for Persons With Haemophilia and Other Coagulation Deficiencies: a Comparison of Perceived and Observed Accessibility in the Auvergne-Rhône-Alpes Region (France) (PHAREO)

Type

Observational

Pathologie

Hémophilie A
Déficits en facteurs de la coagulation

Phase

Promoteur

RESCUe - RESeau Cardiologie Urgence / RESUVal - RESeau des Urgences de la vallée du Rhône (Voir sur ClinicalTrials)

Date de début

septembre 2020

Date de fin

mai 2021

Dernière mise à jour

29 juin 2024

Résumé

The current treatment of people with haemophilia and other bleeding deficiencies is largely based on clotting factor replacement therapy. The injections can be repeated several times a week according to a personalized schedule. To date, medications are exclusively dispensed in hospital pharmacies to ensure traceability and safety. This retrocession imposes accessibility constraints on patients and on their caregivers, increasing the burden of the disease, particularly in the organization of personal and professional daily life. The PHAREO study aims to investigate patients' perception of accessibility to anti-haemophilia drugs in relation to an evaluation of spatial accessibility in the Auvergne-Rhône-Alpes region (France) in order to consider, if necessary, ways of improving the pathway for patients and their caregivers.

Détail

Voir le détail Haemophilia is a rare constitutional hemorrhagic disease whose drug management is based on the use of chronic lifelong replacement therapy. For many years, the reference treatment, particularly in children, has been based on the use of anti-haemophilic drugs for prophylaxis requiring repeated injections several times a week according to a personalized schedule. In contrast, on-demand treatment is less and less used, particularly in patients with severe forms of haemophilia. Clinical and biological diagnosis, as well as the implementation and monitoring of treatments, are carried out within specialized hospital care structures affiliated with the French national reference center. Medications are dispensed as part of hospital retrocessions. This organization imposes constraints on patients and their caregivers due to their limited accessibility. 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. Fermer le détail

Etablissements

Les établissements sans correspondance certaine dans le répertoire FINESS dont les données sont issues de ClinicalTrials.gov Origine et niveau de fiabilité des données
Centre Hospitalier Albertville-Moûtiers - 73200 - Albertville - France	Thomas Gailland	En recrutement	Contact (sur clinicalTrials)
Centre Hospitalier Alpes Léman - 74130 - Contamine-sur-Arve - France	Catherine Diakhate	En recrutement	Contact (sur clinicalTrials)
Centre Hospitalier Annecy Genevois - 74370 - Annecy - France	Christelle Roch	En recrutement	Contact (sur clinicalTrials)
Centre Hospitalier d'Ardèche Méridionale - 07200 - Aubenas - France	Alain Lenoir	En recrutement	Contact (sur clinicalTrials)
Centre Hospitalier d'Ardèche Nord - 07103 - Annonay - France	Sophie Vernardet	En recrutement	Contact (sur clinicalTrials)
Centre Hospitalier de Belley - 01300 - Belley - France	Marie Geneste	En recrutement	Contact (sur clinicalTrials)
Centre hospitalier de Bourg St Maurice - 73700 - Bourg St Maurice - France	Valérie Chaminant	En recrutement	Contact (sur clinicalTrials)
Centre Hospitalier de Chambéry - Hôpital Savoie - 73000 - Chambéry - France	Elodie Bernard	En recrutement	Contact (sur clinicalTrials)
Centre Hospitalier de Montélimar - 26200 - Montélimar - France	Jérémy Rolain	En recrutement	Contact (sur clinicalTrials)
Centre Hospitalier de Moulins-Yzeure - 03006 - Moulins - France	Emmanuel Deligeard	En recrutement	Contact (sur clinicalTrials)
Centre Hospitalier de Roanne - 42300 - Roanne - France	Maud Rossignol	En recrutement	Contact (sur clinicalTrials)
Centre Hospitalier de Valence - 26000 - Valence - France	Stéphanie Bourget	En recrutement	Contact (sur clinicalTrials)
Centre Hospitalier de Vichy - 03200 - Vichy - France	Jérôme Tavernier	En recrutement	Contact (sur clinicalTrials)
Centre Hospitalier des Vals d'Ardeche - 07007 - Privas - France	Dominique Quinard	En recrutement	Contact (sur clinicalTrials)
Centre Hospitalier du Forez - 42600 - Montbrison - France	Hadyl Asfari	En recrutement	Contact (sur clinicalTrials)
Centre Hospitalier Du Haut Bugey - 01100 - Oyonnax - France	Nathalie Dey	En recrutement	Contact (sur clinicalTrials)
Centre Hospitalier Fleyriat - 01012 - Bourg-en-Bresse - France	Stéphanie Claveranne	En recrutement	Contact (sur clinicalTrials)
Centre Hospitalier Henri Mondor d'Aurillac - 15000 - Aurillac - France	Valérie Millot	En recrutement	Contact (sur clinicalTrials)
Centre Hospitalier Intercommunal Sud-Léman Valserine - 74164 - Saint-Julien-en-Genevois - France	Alexandra Combes	En recrutement	Contact (sur clinicalTrials)
Centre Hospitalier Lucien Hussel - 38200 - Vienne - France	Anne-Sophie Leromain	En recrutement	Contact (sur clinicalTrials)
Centre Hospitalier Pierre Oudot - 38300 - Bourgoin-Jallieu - France	Clément Beyron	En recrutement	Contact (sur clinicalTrials)
Centre Hospitalier Universitaire de Clermont-Ferrand - 63100 - Clermont-Ferrand - France	Anne Boyer	En recrutement	Contact (sur clinicalTrials)
Centre Hospitalier Universitaire Grenoble - Alpes - 38700 - La Tronche - France	Sophie Cerena	En recrutement	Contact (sur clinicalTrials)
Centre Hospitalier Uuniversitaire Nord, Saint-Étienne - 42270 - Saint-Priest-en-Jarez - France	Jihen Boussetta	En recrutement	Contact (sur clinicalTrials)
Groupement Hospitalier Est, Hospices Civils de Lyon - 69500 - Bron - France	Valérie Chamouard	En recrutement	Contact (sur clinicalTrials)
Hôpital de la Croix-Rousse, Hospices Civils de Lyon - 69004 - Lyon - France	Anne-Claire Uhrès	En recrutement	Contact (sur clinicalTrials)
Hôpital de Montluçon - 03100 - Montluçon - France	Carole Rimpici	En recrutement	Contact (sur clinicalTrials)
Hôpital Edouard herriot, Hospices Civils de Lyon - 69003 - Lyon - France	Elodie Lanoi	En recrutement	Contact (sur clinicalTrials)
Hôpital Nord Ouest de Villefranche-sur-Saône - 69400 - Gleizé - France	Magali Bourdelin	En recrutement	Contact (sur clinicalTrials)
Hôpital Nord-Ouest Tarare-Grandris - 69170 - Tarare - France	Christine Vray	En recrutement	Contact (sur clinicalTrials)
Hôpitaux Drôme Nord - 26100 - Romans-sur-Isère - France	Xavier Cussoneau	En recrutement	Contact (sur clinicalTrials)
Hopitaux du Léman - 74203 - Thonon-les-Bains - France	Denis Hardelin	En recrutement	Contact (sur clinicalTrials)
Hôpitaux du Pays du Mont-Blanc - 74700 - Sallanches - France	Marion Filippi	En recrutement	Contact (sur clinicalTrials)
Pharmacie Centrale, Hospices Civils de Lyon - 69230 - Saint-Genis-Laval - France	Isabelle Carpentier	En recrutement	Contact (sur clinicalTrials)

Critères

Genre

Tous

Nombre d'inclusion

Critère d'inclusion

Included:

- Living person on the study start date and presenting with haemophilia or other
coagulation deficiencies;

- Treated with prophylaxis or on-demand anti-haemorrhagic treatments;

- Location of medication dispensing within the hospital pharmacies of the HEsora
network (Hémophilie Soins Rhône Alpes): 27 eligible hospital pharmacies in Rhône
Alpes + <10 eligible hospital pharmacies in Auvergne

Excluded:

- Home delivery (not included in the study via hospital pharmacy)

Critère de non inclusion

NCT04775888 - Prophylaxis and On-demand Treatment for Persons With Haemophilia and Other Coagulation Deficiencies: a Comparison of Perceived and Observed Accessibility in the Auvergne-Rhône-Alpes Region (France) (PHAREO)

Informations générales
Etablissements
Critères
Accès à la fiche NCT

Retour en haut