Infections

All Conditions

Symptoms and General Pathology

Neoplasms

Blood and Lymph Conditions

Immune System Diseases

Heart and Blood Diseases

Diseases and Abnormalities at or Before Birth

Rare Diseases

Syndrome

Leukemia

Leukemia, Myeloid

Leukemia, Myeloid, Acute

Hemorrhage

Communicable Diseases

Preleukemia

Myelodysplastic Syndromes

Anemia

Lymphoma

Multiple Myeloma

Neoplasms, Plasma Cell

Anemia, Aplastic

Hemostatic Disorders

Blood Coagulation Disorders

Hemophilia A

Hemophilia B

Hematologic Diseases

Acute Disease

Neoplasms by Histologic Type

Vascular Diseases

Paraproteinemias

Blood Protein Disorders

Hemorrhagic Disorders

Lymphoproliferative Disorders

Immunoproliferative Disorders

Bone Marrow Diseases

Blood Coagulation Disorders, Inherited

Coagulation Protein Disorders

Genetic Diseases, Inborn

Bone Marrow Failure Disorders

Pancytopenia

Genetic Diseases, X-Linked

Disease Attributes

Myeloid Leukemia

Acute Myeloid Leukemia

Acute Non Lymphoblastic Leukemia

Lymphosarcoma

Aplastic Anemia

Acute Graft Versus Host Disease

Hemophilia

Zhen Song, MD

Background Hematological diseases are disorders of the blood and hematopoietic organs. The current hematological cohorts are mostly based on single-center or multi-center cases, or cohorts with limited sample size in China. There is a lack of comprehensive and large-scale prospective cohort studies in hematology. The purpose of this study is to analyze the incidence and risk factors of major blood diseases, the treatment methods, prognosis and medical expenses of these patients in China.

Method The study will include patients diagnosed with acute myeloid leukemia, multiple myeloma, hemophilia, aplastic anemia, leukemia, myelodysplastic syndrome, lymphoma, bleeding disorders or received bone marrow transplantation in the investigating hospitals from January 1, 2020, and collect basic information, diagnostic and treatment information, as well as medical expense information from medical records. In its current form, the NICHE registry incorporates historical data (collected from 2000) and is systematically collecting prospective data in two phases with broadening reach. The study will use questionnaire to measure the exposure of patients, and prospectively follow-up to collect the prognosis information.

National Longitudinal Cohort of Hematological Diseases

National Longitudinal Cohort of Hematological Diseases (NICHE)

To describe the incidence and population characteristics of hematological diseases in China, such as: leukemia, multiple myeloma, hemophilia, aplastic anemia, myelodysplastic syndrome, lymphoma, bleeding disorders, blood disease infection, et al., and analyze the risk factors associated with these diseases.

To analyze the therapeutic efficacy and long-term prognosis of patients with hematological diseases, such as: leukemia, multiple myeloma, hemophilia, aplastic anemia, myelodysplastic syndrome, lymphoma, bleeding disorders, blood disease infection, et al.

To conduct health economic evaluation on patients with hematological diseases, such as: leukemia, multiple myeloma, hemophilia, aplastic anemia, myelodysplastic syndrome, lymphoma, bleeding disorders, blood disease infection, et al.

Institute of Hematology & Blood Diseases Hospital, China

Director of Institute of Hematology & Blood Diseases Hospital

Nervous System Diseases

Respiratory Tract (Lung and Bronchial) Diseases

Digestive System Diseases

Anemia, Sickle Cell

Myasthenia Gravis

Fibrosis

Pulmonary Fibrosis

Cystic Fibrosis

Idiopathic Pulmonary Fibrosis

Pancreatic Diseases

Gastrointestinal Diseases

Lung Diseases

Respiratory Tract Diseases

Infant, Newborn, Diseases

Hemolysis

Anemia, Hemolytic

Anemia, Hemolytic, Congenital

Hemoglobinopathies

Lung Diseases, Interstitial

Paraneoplastic Syndromes

Paraneoplastic Syndromes, Nervous System

Nervous System Neoplasms

Autoimmune Diseases

Autoimmune Diseases of the Nervous System

Neurodegenerative Diseases

Neuromuscular Junction Diseases

Neuromuscular Diseases

Sickle Cell Anemia

Coagulants

All Drugs and Chemicals

Factor VIII

Patients aged 18+ and diagnosed with cystic fibrosis.

Patients will answer the MAR-Scale once every three months for a year.

Patients aged 18+ and diagnosed with hemophilia A or B.

Patients will answer the MAR-Scale once every three months for a year.

Patients aged 18+ and diagnosed with idiopathic pulmonary fibrosis.

Patients will answer the MAR-Scale once every three months for a year.

Patients aged 18+ and diagnosed with myasthenia gravis.

Patients will answer the MAR-Scale once every three months for a year.

Patients aged 18+ and diagnosed with sickle cell disease.

Patients will answer the MAR-Scale once every three months for a year.

The MAR-Scale is a 20-item questionnaire based on commonly reported reasons for non-adherence to medications.

MAR-Scale

Elizabeth J Unni, BpharmMBAPhD

The purpose of this study is to use the Medication Adherence Reasons Scale (MAR-Scale) to determine the extent of non-adherence to specific medications indicated to treat cystic fibrosis, hemophilia (A or B), idiopathic pulmonary fibrosis, myasthenia gravis, and sickle cell disease, and to identify the top patient-reported reasons for non-adherence. Internal reliability of the MAR-Scale will also be assessed in each condition.

Medication Adherence and Non-adherence in Adults With Rare Disease

A Longitudinal, Digital Study Using the Medication Adherence Reasons Scale (MAR-Scale) to Identify the Reasons for Non-adherence to Medications in Rare Disease

Percentage of respondents who indicated at least one reason for non-adherence in the past seven days.

Use the 200 responses collected from each condition to determine the Cronbach's alpha of the scale for each condition.

The Touro College and University System

Xperiome

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization	Link
National Longitudinal Cohort of Hematological Diseases	NCT04645199	Multiple Myelom... Myeloma, Multip... Myelomas, Multi... Acute Myeloid L... Leukemias, Acut... Myeloid Leukemi... Hemophilia Hemophilia A Hemophilia As Hemophilia B Hemophilia Bs Myelodysplastic... MDS Lymphoma Leukemia Aplastic Anemia Bleeding Disord... Bone Marrow Tra... Blood Disease I...		-	Institute of Hematology & Blood Diseases Hospital, China
Medication Adherence and Non-adherence in Adults With Rare Disease	NCT04541875	Cystic Fibrosis Hemophilia A Hemophilia B Idiopathic Pulm... Myasthenia Grav... Sickle Cell Dis...	MAR-Scale	18 Years -	Xperiome

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