Symptoms and General Pathology

All Conditions

Neoplasms

Diseases and Abnormalities at or Before Birth

Nutritional and Metabolic Diseases

Rare Diseases

Syndrome

Li-Fraumeni Syndrome

Neoplastic Syndromes, Hereditary

Genetic Diseases, Inborn

DNA Repair-Deficiency Disorders

Metabolic Diseases

The group comprises all patients affected by Li Fraumeni and Li Fraumeni Like syndromes

Luca Sangiorgi, MD, PhD

Marina Mordenti, PhD

Manila Boarini, MSc

Luca Sangiorgi, MSc

ReLF is a retrospective and prospective registry, finalized to care and research. It is articulated in main sections - strongly related and mutually dependent on each other - corresponding to different data domains: personal information, clinical data, genetic data, genealogical data, surgeries, etc. This approach has been individuated in order to corroborate and integrate data from different resources and aspects of the diseases and to correlate genetic background and phenotypic outcomes, in order to better investigate diseases pathophysiology.

The common way to collect patient information is frequently chaotic and inconvenient (sometimes even unsafe), particularly when dealing with rare diseases. The need to simplify the diagnostic process and to overcome the difficulties of data storage and analysis, suggested in 2020 to implement the Registry of Li Fraumeni and Li Fraumeni Like syndromes (ReLF)

The ReLFrelies on an IT Platform named GeDI (Genotype-phenotype Data Integration platform). This solution, realized by a collaboration among Department of Rare Skeletal Disorders and a local software-house (NSI - Nier IT Solution), is a GDPR-compliant, multi-client, web-accessible system and it has been designed according to current medical informatics standards (Orphacode, ICD-10, Human Genome Variants Society, Findability Accessibility Interoperability Reusability -FAIR- Principles). GeDI is continuously implemented to improve management of persons with Osteogenesis Imperfecta and to help researchers in analysing collected information. ROI is articulated in main sections:

Ø Personal data: it comprises general information, birth details and residence data Ø Patient data: including the patients internal code, the hospital code and other details on patients Ø Diagnosis: the diagnosis, the status (affected, suspect, etc.), age at diagnosis, comorbidities, allergies, etc.

Ø Genogram: a tool to design family transmission of the disease, flanked by info on diseases status of all included relatives.

Ø Clinical events: records several signs and symptoms of Li Fraumeni and Li Fraumeni like syndromes (representing the main disease features) and 12 additional items to describe the disease Ø Genetic Analysis and Alteration: including technique, sample information, duration of analysis, etc. In addition, this section comprises detailed information on detected pathological variants (gene, international reference, DNA change, Protein change, genomic position, etc.).

Ø Visits: it includes the typology of the visit (genetic, orthopaedic, rehabilitation, paediatric, etc.), the date of the visit, treatment, prescription, imaging, etc.

Ø Surgeries: this section contains information on the surgeries type, the age of the patients, the site/localization of the procedures, etc.

Ø Documents: this repository is allowed to store all type of documents (radiological reports, imaging, consents, clinical reports, etc.).

Ø Consents: this section comprises a complete overview of all collected consents, including the date of collection.

Ø Samples: it comprises the type of samples (DNA, tissue, whole peripheral blood, etc.)

Registry of Li Fraumeni and Li Fraumeni Like Syndromes

Registry of Li Fraumeni and Li Fraumeni Like Syndromes - Registro Della Sindrome di Li Fraumeni Classica e Li Fraumeni Like

This outcome aims to investigate similarities and difference of tumoral manifestation (site of the tumor, type of tumor, age at onset, grade of leasion) in patients affected by Li Fraumeni or Li Fraumeni Like syndromes within the families and among the families.

Assessment of epidemiological information (incidence, prevalence measured as percentages and/or ratios).

Anthropometric data: weight in kg, height in cm. In addition, weight and height will be combined to report BMI as kg/m\^2 Clinical details of the tumor: site of the lesion, number of recurrence(s), presence/absence of metastasis, size of lesion in cm\^3 Additional clinical data: type of surgery, age at surgery in years are updated at each follow up and retrospectively (when possible).

Clinical reports, medical charts and imaging are the primary source of data.

The secondary outcome comprises the correlation between genotype and phenotype. This includes, but is not limited to, clinical features and genetic background. This will be pursued using the information collected during visits and follow-ups and the genetic information resulting from molecular investigations.

Collection of genetics background (target gene, type of mutation, clinical significance are reported following HGVS nomenclature) and family history (in terms of inheritance by maternal or paternal line).

Anthropometric data (weight in kg, height in cm. In addition, weight and height will be combined to report BMI in kg/m\^2), clinical details (site of the lesion, recurrence, metastasis), orthopaedic and functional features are updated at each follow up.

Istituto Ortopedico Rizzoli

Head of Department of Rare Skeletal Disorders

Musculoskeletal Diseases

Skin and Connective Tissue Diseases

Behaviors and Mental Disorders

Osteochondroma

Exostoses, Multiple Hereditary

Osteochondromatosis

Exostoses

Osteophyte

Enchondromatosis

Neoplasms, Bone Tissue

Neoplasms, Connective Tissue

Neoplasms, Connective and Soft Tissue

Neoplasms by Histologic Type

Osteochondrodysplasias

Mucopolysaccharidosis IV

Bone Diseases

Bone Diseases, Developmental

Hyperostosis

Quality of Life

Hereditary Multiple Osteochondromas

Ollier Disease

Mucopolysaccharidosis Type IV

Patients affected by Multiple Osteochondromas. The Registry will include also data on foetuses (prenatal).

Luca Sangiorgi, MD, PhD, MS

REM is a retrospective and prospective registry, finalized to care and research. It is articulated in main sections - strongly related and mutually dependent on each other - corresponding to different data domains: personal information, clinical data, genetic data, genealogical data, surgeries, etc..

This approach has been individuated in order to corroborate and integrate data from different resources and aspects of the diseases and to correlate genetic background and phenotypic outcomes, in order to better investigate diseases pathophysiology.

The common way to collect patient information is frequently chaotic and inconvenient (sometimes even unsafe), particularly when dealing with rare diseases. The need to simplify the diagnostic process and to overcome the difficulties of data storage and analysis, suggested in 2013 to implement the Registry of Multiple Osteochondromas (REM).

The REM relies on an IT Platform named Genotype-phenotype Data Integration platform -GeDI.This solution, realized by a collaboration among Medical Genetic Department and a local software-house (NSI - Nier IT Solution), is a General Data Protection Regulation (GDPR)-compliant, multi-client, web-accessible system and it has been designed according to current medical informatics standards (Orphanet code, ICD-10, Human Genome Variants Society, Findability Accessibility Interoperability Reusability Principles). GeDI is continuously implemented to improve management of persons with Multiple Osteochodromas and to help researchers in analysing collected information. REM is articulated in main sections:

* Personal data: it comprises general information, birth details and residence data
* Patient data: including the patients internal code, the hospital code and other details on patients
* Diagnosis: the diagnosis, the status (affected, suspect, etc.), age at diagnosis, comorbidities, allergies, etc.
* Genogram: a tool to design family transmission of the disease, flanked by info on diseases status of all included relatives
* Clinical events: records more than 20 signs and symptoms of Multiple Osteochondromas and 12 additional items to describe the disease
* Genetic Analysis and Alteration: including technique, sample information, duration of analysis, etc. In addition, this section comprises detailed information on detected pathological variants (gene, international reference, DNA change, Protein change, genomic position, etc.)
* Visits: it includes the typology of the visit (genetic, orthopaedic, rehabilitation, paediatric, etc.), the date of the visit, treatment, prescription, imaging, etc.
* Surgeries: this section contains information on the surgeries type, the age of the patients, the site/localization of the procedures, etc.
* Documents: this repository is allowed to store all type of documents (radiological reports, imaging, consents, clinical reports, etc.)
* Consents: this section comprises a complete overview of all collected consents, including the date of collection.
* Samples: it comprises the type of samples (DNA, tissue, whole peripheral blood, etc.)

Whole peripheral blood, DNA, lymphocytes, cartilage tissues, bone tissues

Registry of Multiple Osteonchodromas

Registry of Multiple Osteochondromas That Collects Clinical, Functional, Genetic, Genealogical, Imaging, Surgical, Quality of Life Data. Data Are Linked to Patients Biological Sample

This outcome aims to investigate the evolution of Multiple Osteochondromas during time. This will be evaluated within the families and among the families.

Main clinical features, such as height (cm), number and localization of osteochondromas, number and localization of deformities, number and localization of limitations will be collected both retrospectively and prospectively for paediatric population. An evaluation of these parameters will be performed at each visit to keep trace on the progression of the clinical manifestations.

In adult population, the disease evolution is centered on malignant transformation.

To maintain an established registry in order to assess epidemiology and natural history (such as incidence, prevalence, etc.) of Multiple Osteochondromas.

Collection of:

1. physical examinations data: assessment of severity of the disease (defined according to Mordenti et al classification)
2. orthopaedic and functional data: stature (cm), weight (kg), number and localization of sites affected by osteochondromas, site of malignant transformation, definition of deformities (localization and number), definition of limitations (localization and number)
3. surgical procedures: type, number and site of surgeries disease-related and age at surgeries
4. genetics background: target gene, type of mutation, type of variant detected, clinical significance
5. family history: inheritance in maternal or paternal line

Clinical, orthopaedic and functional features are updated at each follow up. Clinical reports, medical charts, genetic report and imaging are the primary source of data.

The secondary outcome comprises the correlation between genotype and phenotype. This includes, but is not limited to clinical features and genetic background. This will be pursued using the information collected during visits and follow-ups and the genetic information resulting from molecular investigations.

Luca Sangiorgi

Head of Departement of Rare Skeletal Disorders

Maffucci Syndrome

The group comprises all patients affected by Ollier Disease and Maffucci Syndrome.

The common way to collect patient information is frequently chaotic and inconvenient (sometimes even unsafe), particularly when dealing with rare diseases. The need to simplify the diagnostic process and to overcome the difficulties of data storage and analysis, suggested in 2013 to implement the Registry of Ollier Disease and Maffucci Syndrome (ROM).

The ROM relies on an IT Platform named Genotype-phenotype Data Integration platform -GeDI.This solution, realized by a collaboration among Medical Genetic Department and a local software-house (NSI - Nier IT Solution), is a General Data Protection Regulation (GDPR)-compliant, multi-client, web-accessible system and it has been designed according to current medical informatics standards (Orphanet code, ICD-10, Human Genome Variants Society, Findability Accessibility Interoperability Reusability Principles). GeDI is continuously implemented to improve management of persons with Ollier Disease and Maffucci Syndrome and to help researchers in analysing collected information. ROM is articulated in main sections:

Personal data: it comprises general information, birth details and residence data Patient data: including the patients internal code, the hospital code and other details on patients Diagnosis: the diagnosis, the status (affected, suspect, etc.), age at diagnosis, comorbidities, allergies, etc.

Genogram: a tool to design family transmission of the disease, flanked by info on diseases status of all included relatives Clinical events: records 23 signs and symptoms of Ollier Disease and Maffucci Syndrome and 12 additional items to describe the disease Genetic Analysis and Alteration: including technique, sample information, duration of analysis, etc. In addition, this section comprises detailed information on detected pathological variants (gene, international reference, DNA change, Protein change, genomic position, etc.) Visits: it includes the typology of the visit (genetic, orthopaedic, rehabilitation, paediatric, etc.), the date of the visit, treatment, prescription, imaging, etc.

Surgeries: this section contains information on the surgeries type, the age of the patients, the site/localization of the procedures, etc.

Documents: this repository is allowed to store all type of documents (radiological reports, imaging, consents, clinical reports, etc.) Consents: this section comprises a complete overview of all collected consents, including the date of collection.

Samples: it comprises the type of samples (DNA, tissue, whole peripheral blood, etc.)

Whole peripheral blood, DNA, lymphocytes, tissues

Registry of Ollier Disease and Maffucci Syndrome

Registry of Ollier Disease and Maffucci Syndrome That Collects Clinical, Functional, Genetic, Genealogical, Imaging, Surgical, Quality of Life Data. Data Are Linked to Patients Biological Sample

This outcome aims to investigate the evolution of Ollier Disease and Maffucci Syndrome during time.

Main clinical features evaluated:

* Height (cm) age-related (compared to growth chart)
* Number and localization of enchondromas
* Number and localization of deformities
* Number and localization of functional limitations
* Site at malignant transformation (adult)
* Age at malignant transformation (adult)

Number: count of enchondromas, deformities, etc. Localization: defined using bone affected, site (proximal, distal, etc.) and side (left, right, both)

Those data will be collected both retrospectively and prospectively for all patients via physical examination, clinical reports and imaging.

An evaluation of these parameters will be performed at each visit to keep trace on the progression of the clinical manifestations. Data will be collected to define annualized rate of new clinical manifestations related to age, using analyses such as Kaplan-Meyer and surviving rate.

To maintain an established registry in order to assess epidemiology and natural history (such as incidence, prevalence, etc.).

Collection of:

1. Physical examinations data:

   * BMI (kg/m\^2)
   * Number and localization of sites affected by enchondromas
   * Presence/absence of angiomas
   * Localization and number of deformities
   * Localization and number of functional limitations
2. Surgical procedures disease-related:

   * Type of surgeries
   * Number of surgeries
   * Site of surgeries
   * Age at surgeries
3. Genetics background: studies of somatic variants
4. Family history: anamnestic family information

Number: count of enchondromas, deformities, etc. Localization: defined using bone affected, site (proximal, distal, etc.) and side (left, right, both)

Clinical, orthopaedic and functional features are updated at each follow up. Clinical reports, medical charts and imaging are the primary source of data.

Despite the unclear genetic background of Ollier disease and Maffucci syndrome, the secondary outcome aims to correlate genotype and phenotype. This includes, but is not limited to clinical features and genetic background. This will be pursued using the information collected during visits and follow-ups and the genetic information resulting from molecular investigations.

Heart and Blood Diseases

Blood and Lymph Conditions

Immune System Diseases

Multiple Myeloma

Neoplasms, Plasma Cell

Hemostatic Disorders

Blood Coagulation Disorders

Vascular Diseases

Paraproteinemias

Blood Protein Disorders

Hematologic Diseases

Hemorrhagic Disorders

Lymphoproliferative Disorders

Immunoproliferative Disorders

Newly diagnosed multiple myeloma patients enrolled between Sep 2009 and Nov 2011.

Newly diagnosed multiple myeloma patients enrolled between Dec 2012 and mid-2016

Amit Agarwal, MD PhD

The purpose of the Connect® MM Registry is to explore the natural history and real world management of patients with newly diagnosed symptomatic multiple myeloma (MM) and provide unique insights into the management of MM and the impact of this hematologic disorder on patients.

Connect® MM- The Multiple Myeloma Disease Registry

Describe practice patterns of common first-line treatment regimens and subsequent therapeutic strategies in patients newly diagnosed with symptomatic MM in the community and academic setting

Provide insight into treatment regimens and therapy sequence in clinical practice as they relate to clinical outcomes (response, overall survival, progression-free survival) in patients newly diagnosed with symptomatic MM

Describe any differences in effectiveness associated with different treatment regimens, including common first-line regimens, subsequent therapeutic strategies and regional effects (such as proximity of academic centers) in patients newly diagnosed with symptomatic MM

Describe the health-related quality of life (HRQoL) of patients newly diagnosed with symptomatic MM, and to explore the association with HRQoL of treatment regimens/sequence and clinical outcomes

Celgene

Preleukemia

Myelodysplastic Syndromes

Bone Marrow Diseases

Precancerous Conditions

Antineoplastic Agents

All Drugs and Chemicals

Lenalidomide

Immunologic Factors

Angiogenesis Inhibitors

Growth Inhibitors

Patients with transfusion-dependent, low- or intermediate (int)-1risk MDS and isolated del (5q) who receive at least 1 dose of lenalidomide after 15th June 2007 and have been followed up for on the registry for 3 years or until death/consent withdrawal

All MDS patients who have been diagnosed on 15th June 2007 or later, have never been exposed to lenalidomide and have been followed up on the registry for 3 years or until death/consent withdrawal

Lenalidomide as prescribed in routine clinical practice for low to intermediate-1 risk MDS

Bristol-Myers Squibb

This registry is a prospective, non-interventional, post authorisation safety study for patients diagnosed with Transfusion Dependent, IPSS low or intermediate-1-Risk Myelodysplastic Syndrome (MDS), associated to a single abnormality of the chromosome 5 \[del(5q)\].

The purpose of this study is to collect additional data about the safety of an oral drug (lenalidomide, Revlimid®) that may have been prescribed to relieve anemia and decrease the need of blood transfusions. However, also patients affected by the MDS del(5q) who receive other treatments different from lenalidomide can be included in this study, if they agree.

Non-interventional Study of Lenalidomide in the Clinical Routine Treatment of TD Patients With IPSS Low or Int-1 MDS and Isolated Del(5q)

A Post-authorization, Non-interventional, Safety Study Study of Patients With Myelodysplastic Syndromes (MDS) Treated With Lenalidomide.

Incidence, as well as the attributable risk (AR) and AR percent (%). Progressive Disease criteria includes increasing monoclonal paraprotein levels, bone marrow findings, worsening lytic bone disease, progressively enlarging extramedullary plasmacytomas, or hypercalcemia.

Number of MDS participants who survive who have never been treated with Lenalidomide

Type, frequency, severity of advere events and relationship of adverse events to Lenalidomide. An adverse ecent is defined as any untoward medical occurrence in a patient administered a pharmaceutical product and which does not necessarily have a causal relationship with this treatment, ie, any unfavorable and unintended sign, symptom, or disease temporally associated with the use of a medicinal product whether or not considered related to the medicinal product

Employ Cox proportional hazards models among MDS patients included in the primary population who have been treated with lenalidomide

Provide insight into treatment regimens and therapy sequence in clinical practice as they relate to clinical outcomes (response, overall survival, progression-free survival) in patients in MDS participants

Wounds and Injuries

Nervous System Diseases

Synovitis

Giant Cell Tumors

Giant Cell Tumor of Tendon Sheath

Synovitis, Pigmented Villonodular

Joint Diseases

Tendinopathy

Muscular Diseases

Pigmented Villonodular Synovitis

Global Clinical Leader

TGCT is a rare disease that is difficult to manage, surgical resection is the primary treatment currently available. To date no disease registry exists and there is little data available detailing the management of patients with diffuse TGCT (d-TGCT), the burden of d-TGCT for patients (including pain, joint stiffness, swelling, reduced mobility and quality of life) or the economic impact of d-TGCT.

This study aims to collect data by an observational disease registry involving no intervention to the patient or changes to investigators treatment decisions.

GCT is a rare, benign, but potentially locally aggressive and recurrent disease. Treatment pattern and treatment initiation, continuation or changes are solely at the discretion of the physician and the patient.

There will be no attempt to influence the prescribing patterns of any individual treating physician. All medication will be prescribed in the usual standard of care and will not be provided by the study sponsor.

Participation in the study will in no way influence payment or reimbursement for any treatment received by patients during the study.

It is the responsibility of the investigator and his study staff to enter all relevant patient data required for this registry in the electronic Case Report Form (eCRF) and in the patients' medical records.

Approximately 15 sites from up to 6 European Countries (France, Germany, Italy, The Netherlands, Spain and United Kingdom) and 4 sites from the US are planned to participate. The sites will be specialized sites that treat d-TGCT regularly.

Tenosynovial Giant Cell Tumors (TGCT) Observational Platform Project

A Disease Registry for Patients With Tenosynovial Giant Cell Tumors (TGCT), Also Known as Pigmented Villonodular Synovitis (PVNS) and Giant Cell Tumor of the Tendon Sheath (GCT-TS)

The management plan received among the patients was collected from information routinely recorded in the patient files / medical records.

The current TGCT treatment plan among the patients was collected from information routinely recorded in the patient files / medical records.

Type of treatment plan received among the patients was collected from information routinely recorded in the patient files / medical records.

The status of treatment plan among the patients was collected from information routinely recorded in the patient files / medical records.

Type of current TGCT treatment among the patients was collected from information routinely recorded in the patient files / medical records.

Tumor severity classification was collected from information routinely recorded in the patient files / medical records. ). Tumor severity classification was based on MRI. In this classification scheme, moderate diffuse TGCT is characterized by intra- and/or extra-articular disease, without or with involvement of muscle/tendinous tissue/ligaments. Severe diffuse TGCT is characterized by intra- and extra-articular involvement and involvement of at least one of the 3 structures (muscle/tendinous tissue/ligaments).

Complications due to surgery were collected from information routinely recorded in the patient files / medical records.

Tumor recurrence was collected from information routinely recorded in the patient files / medical records.

Time since most recent tumor recurrence was collected from information routinely recorded in the patient files / medical records.

Time from baseline to first tumor recurrence was collected from information routinely recorded in the patient files / medical records.

The BPI short form is a self administered questionnaire that assesses severity of pain, impact of pain on daily function, location of pain, pain medications and amount of pain relief in the past 24 hours or the past week. The BPI pain severity and interference score ranges from 0 (pain does not interfere) to 10 (pain completely interferes), where lower scores indicate better clinical outcome.

The Worst Stiffness numerical rating scale (NRS) is a one-item self-administered, patient-reported outcome questionnaire assessing the "worst" stiffness in the last 24 hours. The NRS for this item ranges from 0 ("no stiffness") to 10 ("stiffness as bad as you can imagine"), where lower scores indicate better clinical outcome.

PROMIS® (Patient-Reported Outcomes Measurement Information System) is a set of person-centered measures that evaluates and monitors physical, mental, and social health. Physical function scores range from 0 (worst physical function) to 100 (best physical function, where higher scores indicate better clinical outcome.

The EQ-5D-5L questionnaire measures the patient's quality of life (QoL) based on the 5 dimensions mobility, self care, usual activities, pain/discomfort, and anxiety/depression. The EQ-5D index score ranges from 0 (worst QoL) to 1 (best QoL), where lower scores indicate worse clinical outcome. The EQ-5D VAS reports patient's self rated health ranging from 0 (worst health) to 100 (best health you can imagine), where lower scores indicate worse clinical outcome.

Health resource utilization was assessed by mean number of general practitioner visits, specialist visits, and physical therapy sessions. In addition, the mean number of days in rehabilitation and the number of work days missed were also reported.

The median number of days in rehabilitation and the number of work days missed were also reported.

TGCT outcome status was collected from information routinely recorded in the patient files / medical records.

Optimapharm

Daiichi Sankyo

Treatment-emergent adverse events and serious adverse events were not assessed in this non-interventional study. Adverse drug reactions suspected to be related to pexidartinib were only collated for patients from the United States.

All participants with diffuse tenosynovial giant cell tumors (d-TGCT) who were enrolled in the study.

Overall

Tenosynovial Giant Cell Tumors

Age, Continuous

<40 years

≥40 and <60 years

≥60 years

Age, Customized

Sex: Female, Male

Race and Ethnicity were not collected from any participant.

Race and Ethnicity Not Collected

Austria

Netherlands

United States

Italy

United Kingdom

France

Germany

Spain

Region of Enrollment

Knee joint

Ankle joint

Shoulder joint

Foot

Elbow joint

Wrist joint

Hand

Temporomandibular

Tumor location/affected joint

Pain

Limited range of movement

Swelling

Stiffness

Patient unable to judge

Current symptoms

Not applicable

Missing

Most disturbing symptom

4 current symptoms

3 current symptoms

2 current symptoms

Unknown/missing

Number of participants with current symptoms

Demographic and baseline characteristics were assessed in the Full Analysis Set.

This was an observational study and the quality of data has not been verified 100%. Baseline data were checked during on-site visits for all patients enrolled in Europe. Due to the COVID-19 pandemic, the planned on-site monitoring visits in the US could not be performed. Instead, more frequent and detailed remote visits were performed for these sites. Follow-up data for all patients were regularly monitored remotely. A certain amount of incorrect/incomplete data has to be assumed for all sites.

Contact for Clinical Trial Information

Any prior or concomitant therapies for managing TGCT-related symptoms

Any changes to concomitant therapies for managing TGCT-related symptoms since the last visit

Any changes to TGCT treatment (including also planned treatments) since the last visit

All participants with diffuse tenosynovial giant cell tumors (d-TGCT) who were enrolled at baseline in the study.

Baseline

Management plans were assessed in participants with available data in the Full Analysis Set. Participants may have be included in more than one category.

Study title	NCT ID	Conditions	Interventions	Eligibility	Organization
Registry of Li Fraumeni and Li Fraumeni Like Syndromes	NCT04982744	Li-Fraumeni Syn... Li-Fraumeni-Lik...		-	Istituto Ortopedico Rizzoli
Registry of Multiple Osteonchodromas	NCT04133285	Multiple Osteoc...		-	Istituto Ortopedico Rizzoli
Registry of Ollier Disease and Maffucci Syndrome	NCT04134572	Ollier Disease Maffucci Syndro...		-	Istituto Ortopedico Rizzoli
Connect® MM- The Multiple Myeloma Disease Registry	NCT01081028	Multiple Myelom...		18 Years -	Celgene
Non-interventional Study of Lenalidomide in the Clinical Routine Treatment of TD Patients With IPSS Low or Int-1 MDS and Isolated Del(5q)	NCT02279654	Myelodysplastic...	Lenalidomide	18 Years -	Celgene
Connect® MM- The Multiple Myeloma Disease Registry	NCT01081028	Multiple Myelom...		18 Years -	Celgene
Tenosynovial Giant Cell Tumors (TGCT) Observational Platform Project	NCT02948088	Giant Cell Tumo...		18 Years -	Daiichi Sankyo
LUMINIST: LUng Cancer Molecular Insights Non Interventional Study	NCT02300831	NSCLC	Data Collection	-	AstraZeneca
Connect™ CLL: The Chronic Lymphocytic Leukemia Disease Registry	NCT01081015	Chronic Lymphoc...		18 Years -	Celgene
Met Non Small Cell Cancer Registry (MOMENT)	NCT05376891	Cancer		-	EMD Serono
Registry of Li Fraumeni and Li Fraumeni Like Syndromes	NCT04982744	Li-Fraumeni Syn... Li-Fraumeni-Lik...		-	Istituto Ortopedico Rizzoli

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