DMD Registry - Romania

DMD Registry - Romania

There are two DMD registries in Romania for patients diagnosed with Duchenne / Becker Muscular Dystrophy.

One registry is run by the patient organisation Parent Project Romania and the person in charge of the registry is Isabela Tudorache. The other registry is run by Dr Dana Craiu, Carol Davila University of Medicine.

Parent Project Romania Registry
The DMD / BMD Patients' Registry is an online database for Romanian patients diagnosed with Duchenne / Becker Muscular Dystrophy. The patients, with the help of specialist doctors, can enter data about their diagnosis, their condition and the therapies that they follow. Physicians who want to enter data on their patients with DMD / BMD are invited to contact us.

The purpose of this Registry is:
- Easier access to clinical trials regarding new therapies for Romanian patients;
- Stimulate muscular dystrophy scientific research that aims to collect relevant information and making it available to specific projects in this area;
- Using information provided for a better understanding of this disease;
- Closer links between participating patients registered in the Registry and medical staff specialized in the field;
- Capacity improvement of care to those affected by muscular dystrophy and to provide new treatments in the field.

Patients' participation in the Registry is:
- Absolutely voluntary;
- Confidential;
- Anonymous;
- Support for scientific research and a better understanding of muscular dystrophy Duchenne / Becker;
- A necessary tool for development and implementation of new therapies;
- A fundamental tool for obtaining an overview about this disease and the needs of patients in Romania.

Location / holder of the Registry: Parent Project Romania

Registry PI: Isabela Tudorache (PP Romania)

Geneticist: Dr. Amelia Dobrescu


Registration: The Registry is running and patients/parents can register by self-report through http://www.parentproject.ro/.

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Registrul Pacientilor DMD/DMB este o banca de date on-line pentru pacientii romani diagnosticati cu Distrofie Musculara Duchenne / Becker. Pacientii, cu ajutorul medicilor de specialitate, pot introduce singuri datele privind diagnosticul, starea pacientului si terapiile pe care le urmeaza. Medicii de specialitate sau medicii curanti  care  introduc date privind pacientii lor cu DMD/DMB sunt rugati sa ne contacteze.

Scopul acestui Registru este:
- Facilitarea accesului pacientilor romani la teste clinice ale noilor terapii,
- Stimularea cercetarilor ce vizeaza Distrofia Musculara prin colectarea informatiilor relevante si punerea lor la dispozitia unor proiecte specifice acestui domeniu,
- Folosirea  informatiilor furnizate pentru o mai buna intelegere a acestei afectiuni,
- Strangerea legaturilor intre pacientii participanti la Registru si personalul medical specializat in domeniu,
- Inbunatatirea capacitatii de ingrijire a celor afectati de Distrofie musculara si de furnizare a unor noi terapii in domeniu.

Participarea la Registrul Pacientilor este:
- Absolut voluntara,
- Confidentiala,
- Anonima,
- Un sprijin pentru cercetare si o mai  buna intelegere a Distrofiei Musculare Duchenne/Becker,
- Un instrument necesar pentru dezvoltarea si implementarea unor noi terapii,
- Un instrument fundamental pentru obtinerea unei imagini de ansamblu asupra acestei maladii si a nevoilor pacientilor din Romania.

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Registry run by Dr Dana Craiu

This registry is a prefessional reported registry only, whereby patient data is entered by a doctor.

For more information contact Niculina Botoianu.

Address
Asociatia Parent Project pentru Cercetare si Asistenta in Distrofia Musculara (APPRo)
Aleea 1 C Coposu Nr. 14

Craiova, Dolj
200341
Romania

Email


Call +40 745 007 589