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040161

Natural history of sickle cell disease
Source : Importé depuis le centre

Référence clinicaltrials.gov: NCT00081523
Hemoglobin
Acute Chest Syndrome
Treatment Options
Nitric Oxide
Pulmonary Hypertension
Natural History
Source : Importé depuis le centre
Recrutement partiellement ouvert
Dernière modification : 2025/06/02
Type de recherche

Observationnel


Population cible

Condition médicale (spécialité visée)

Donnée non disponible

Profil des participants

Sexe(s) des participants

ALL

Source : Importé depuis le centre

Critères de sélection

Critères d'inclusion

* INCLUSION CRITERIA:
* Individuals with known or suspected sickle cell disease
* 2 years of age and older
* Willing to provide informed consent or appropriate informed consent from parent or legal guardian
* Patients seen at sickle outpatient clinics at any one of the participating centers (CNHS or NIH).

EXCLUSION CRITERIA:

* Patient and/or guardian unable and unwilling to give informed consent or assent.
* Patients less than 2 years of age.

Source : Importé depuis le centre

Thérapie ou Intervention proposée

Cohortes
Nom Condition médicale Traitement État du recrutement
Patients Individuals with known or suspected sickle cell disease Donnée non disponible
  • Inconnu
  • Patients
    État du recrutement
    unknown
    Données à jour depuis : 2 juin 2025

    Description de l'étude

    Résumé de l'étude

    This study is not a treatment protocol and no experimental treatments are involved. Study participants may be seen as needed for clinical, translational and basic research studies, or as medically indicated. Subjects will receive their general medical care outside the NIH and will be seen at our clinic or at CNHS with varying frequency. Subjects may be seen for multiple visits. Subjects may be asked to return for additional testing as needed. Clinical care for patients with sickle cell disease will be provided as appropriate through the Sickle Cell Clinic and the inpatient clinical center....

    Source : Importé depuis le centre

    This protocol will permit the establishment of a repository of biospecimens from individuals affected with sickle cell disease to identify and evaluate underlying disease mechanism(s), and to facilitate understanding of the pathogenesis and natural history of vaso-occlusive painful crisis and other complications of the disease. Patients will be evaluated with a medical history and physical examination and routine laboratory studies will be obtained as needed to assess diagnosis, disease activity, and disease complications and to monitor for treatment-related responses and toxicities. This protocol may also provide for the continued storage and analysis of clinical and research data, and biospecimens previously obtained from other NIH Institutional Review Board (IRB)-approved protocols with subject consent.

    Patients eligible for other research protocols will be offered an opportunity to participate in these studies after signed informed consent has been obtained. Apart from such protocols, any medical care or additional tests/investigations recommended or provided to the patient will be consistent with routine standards of practice and will be provided in consultation with the patient s referring physician.

    Source : Importé depuis le centre

    Sites

    Centres participants


    Dernière modification : 2 juin 2025
    Données à jour depuis : 4 juin
    Origine des données : clinicaltrials.gov
    Référence clinicaltrials.gov: NCT00081523