• Inclusion of Legacy PH patients from two previous Mayo Clinic Hyperoxaluria Center registry protocol databases will be rolled into the 6401 PH Registry.
• Patients < 18 years with a history of kidney stones, and/or nephrocalcinosis; OR
• Patients > 18 yrs with a history of kidney stones, and/or nephrocalcinosis and at least one of the following:
  • Family history of stones or nephrocalcinosis or unexplained kidney failure;
  • Growth retardation due to metabolic bone disease and/or renal failure;
  • Crystals of unusual type;
  • Mild to moderate proteinuria;
  • Elevated serum creatinine and/or reduced GFR;
  • Hypomagnesemia;
  • Increased urinary calcium excretion; 
  • Increased urinary oxalate excretion; or
  • Renal cysts.
• Family member of a patient who meets any of the above inclusion criteria

• Any patient unwilling to sign a consent.

Patients with or at risk for HCC, Cholangiocarcinoma or Gallbladder Cancer

Participants from The Cholangiocarcinoma Foundation

Using the Tumor Registry 4 question survey we will contact patients to learn how they are doing

Pediatric participants will be identified from the pediatric gastroenterology and hepatology clinic or recruited by parent/guardian

• Subject diagnosed with Sjogren Disease prior to 21 years of age. This will include patients either:
  • Fulfilling AECG or ACR/EULAR criteria; or
  • Are diagnosed by an expert.
• Patients with a history of recurrent or persistent salivary or lacrimal gland inflammation or swelling without an underlying etiology. This can include patients with a label of recurrent juvenile parotitis.
• Elevated SSA/Ro or SSB/La without a diagnosis of SD at study entry.
• Subject suspected of having SD in evolution based on expert opinion.

• Symptom onset after 21 years of age.
• Not receiving care at a study related institution.

Note: Other protocol defined Inclusion/Exclusion Criteria may apply.

Eligibility last updated 8/2/23. Questions regarding updates should be directed to the study team contact.

• Patients with classic hairy cell leukemia.
• Patients with the variant of hairy cell leukemia.

• Children are excluded from the study, since Hairy Cell Leukemia wasn't described in children.

Inclusion Criteria

• Must first enroll in the TBIMS National Database (IRB 69-03).
• Be at least 18 years old at the time of injury.
• Be able to provide self-report information about their childhood (no proxy reporting).
• Must provide informed consent to share their address with the TBIMS National Database.

Exclusion Criteria 

• Non English speaking.
• Enrolled in the TBIMS National Database but 16 or 17 years old.

Note: Other protocol defined Inclusion/Exclusion Criteria may apply.

Eligibility last updated 5/9/23. Questions regarding updates should be directed to the study team contact.

• Male or female patients aged 18 years and older undergoing a clinically indicated gastric emptying study, with or without an assessment of small intestinal and colonic transit.
• Symptoms of dyspepsia (i.e., early satiety, postprandial discomfort, nausea, vomiting, regurgitation).
• Able to provide written informed consent before participating in the study.
• Able to communicate adequately with the investigator and to comply with the requirements for the entire study.

• Clinical evidence of significant cardiovascular, respiratory, renal, hepatic, gastrointestinal, hematological, neurological, psychiatric or other disease that may interfere with the objectives of the study.
• Medications. Opiates, metoclopramide, and high doses of anticholinergic agents (e.g., amitriptyline greater than 50 mg daily).
• Treatment with GLP-1 agonists and amlyin which cause vagal blockade and may affect central processing of pain.
• Any other condition or prior therapy that, in the opinion of the investigator, would make the patient unsuitable for the study.

• Male and female subjects, aged 18 – 65 years, inclusive.
• No medical problems or chronic diseases, specifically, no type 2 diabetes mellitus.
• Body Mass Index (BMI) of ≥ 18 and ≤ 35 kg/m^2 (BMI = weight (kg)/ [height (m)]^2).
• Subjects must agree to the following study restrictions: 
  • Males of procreative capacity (not surgically sterile) will use an acceptable method of contraception from randomization through 1 month following the last dose of study medication. Examples of acceptable contraception for males include abstinence, use of a barrier method, or sterilized or post-menopausal partner;
  • Females of child-bearing potential (not surgically sterile or post-menopausal, defined as 12 months without menses) will use an acceptable method of contraception from 1 month prior to randomization (or screening, if earlier) through 1 month following the last dose of study medication. Examples of acceptable methods of contraception for females include abstinence, double barrier method, IUD, hormonal contraception, or sterilized partner.
• Ability and acceptance to provide written informed consent.
• Willing to participate in the pharmacogenomics sample collection.
• Willing and able to comply with all study requirements and restrictions.
• Willing to not participate in any other interventional trial for the duration of their participation.

• Unable or unwilling to provide informed consent or to comply with study procedures.
• Unwilling to agree to provide pharmacogenomics sample.
• Diagnosis of gastrointestinal diseases.
• Structural or metabolic diseases that affect the GI system.
• Unable to avoid the following over-the-counter medications 48 hours prior to the receipt.
• of study medication and throughout the study:
  • Medications that alter GI transit including laxatives, magnesium and aluminum containing antacids, prokinetics, erythromycin;
  • Analgesic drugs including NSAIDs and COX-2 inhibitors.
    • NOTE:  Stable doses of thyroid replacement, estrogen replacement, low-dose aspirin for cardioprotection, and birth control are permissible. 
• History of recent surgery (within 60 days of screening).
• Pregnant or nursing.
• History of intolerance and/or hypersensitivity to medications similar to tradipitant and its accompanying excipients.
• History (including family history) or current evidence of congenital long QT syndrome or known acquired QT interval prolongation (including QTcF > 450 in males or > 470 in females at screening).
• History of suicide attempt and/or suicidal ideation (of type 4 or 5 on the Columbia Suicide Severity Rating Scale (C-SSRS)) within 2 years of screening or subject is at risk of suicide at Screening or Baseline visits, in the opinion of the investigator.
• Recent history (within six months of screening) of Alcohol Use Disorder or Substance Use Disorder which may include a positive drug screen at the Screening visit.
• Acute or chronic illness or history of illness, which in the opinion of the investigator could pose a threat or harm to the subject or obscure interpretation of laboratory test results or interpretation of study data such as frequent angina, Class III or IV congestive heart failure, any impairment of renal or hepatic function, poorly controlled diabetes, etc.
• Indication of impaired liver function (including values for AST, ALT, or bilirubin > 2 times the Upper Limit of Normal, unless isolated bilirubin > 2 x ULN due solely to Gilbert’s syndrome).
• Has a creatinine level > 2 x ULN.
• Anyone affiliated as a member of the investigative team or sponsor and/or anyone who may consent under duress.
• Any other reason as determined by the Investigator which may lead to an unfavorable risk-benefit of study participation, may interfere with study compliance, or may confound study results. 

• Patients with pouch-related disorders will be recruited from participating sites at the time of clinic visits.
• At the time of enrollment, patients will be classified as having one of four inflammatory pouch conditions (acute pouchitis, CADP, CARP, or CD of the pouch).
• All visits will be standard of care visits, where patients are identified as potential candidates for enrollment based on presentation with a pouch-related diagnosis.
• Following the initial recruitment and data collection, patients will complete online questionnaires at 3, 6, and 12 months following enrollment in the prospective pouch registry.

• No previous surgical treatment for hydrocephalus (HC).
• Gestational age < 41 weeks at 1st neurosurgical  intervention.
• IVH documented by US.
• Hydrocephalus with progressing ventricular size (US ventricular indices above 97th percentile) diagnosed by pre-operative ultrasonography.
• The ultrasonography represents the standard screening method and is obligatory to make the diagnosis. The following standard ventricular parameters should be gathered: bilateral Ventricular Index (VI); bilateral Anterior Horn Width (AHW); third Ventricle Width (TVW); bilateral Thalamo-Occipital Distance (TOD).
• Surgically treated with any of the following: NEL, EVD, VAD, VSGS.
• Ability to follow-up 5 years after initial surgical treatment.

• Comorbidity related instability forbidding surgical intervention.
• Diagnosed impaired hemostasis in most recent laboratory results within up to 5 days before surgery (platelet counts < 50000/ml; prothrombin time (Quick) > 20 sec.; PTT > 50 sec.).
• Proven CNS tumor.
• Proven vascular malformation.

• Mayo Clinic patients with a previously confirmed infection with the novel SARS-CoV-2 virus who have been seen in the PCOC, CARP, Pulmonary for post COVID clinic, Neurology, or approval by MAGPIES research group.
• Aged  5 years and older.
• All racial and ethnic groups are eligible.
• Women with a previously confirmed infection with the novel SARS-CoV-2 virus of childbearing potential and pregnant women will be offered enrollment because there is no risk to an unborn child in this investigation. 

• Lacking the capacity to consent.
• Prisoners and institutionalized individuals.
• Non-English speakers will be enrolled into the study but will not be specifically targeted.

• Age ≥ 18 years.
• Able to provide written informed consent.
• Meets criteria as a High-Risk Individual as defined by protocol.

• Individuals less than 18 years.
• Individual who has a personal history of pancreatic ductal adenocarcinoma (PDAC).
• History of total pancreatectomy.

Note: Other protocol defined Inclusion/Exclusion criteria may apply.

Eligibility last updated 9/30/22. Questions regarding updates should be directed to the study team contact.

• Age 45 years and greater.
• Receiving primary care services at any of the 3 main Mayo Clinic sites and Mayo Clinic Health system in Northwest Wisconsin.

• Lack of consent for use of medical records for research.

• Adults age 18 years and older.
• Eligible for the use of elective intravenous sotalol loading to treat atrial arrhythmias, per the treating clinician.
• IV sotalol infusion started for the treatment of atrial arrhythmias, in the setting of initiation or dose titration of chronic sotalol therapy.
• Elective hospital admission primarily for loading with intravenous sotalol with/without cardioversion, with no other planned therapy or procedures .

• Study materials not available in the subject’s preferred language.
• Patients undergoing treatment for active concomitant ventricular arrhythmias.
• Standard exclusions for elective sotalol use (at the time of initiation):
  • Heart rate < 40 bpm or 2nd/3rd degree AV block without pacemaker;
  • QTc ≥ 450 in absence of bundle branch block (≥ 500 in the presence of a bundle branch block);
  • Severe left ventricular hypertrophy (thickness > 1.5 cm).
• Patients who were previously intolerant to antiarrhythmic class III therapy.
• Patients missing key data elements in their electronic health record (for retrospective subjects only).

Eligibility last updated 2/11/22. Questions regarding updates should be directed to the study team contact.

- Willing and able to comply with the required clinic visits, study procedures and assessments.
- Able to understand and complete study-related questionnaires.
- Provide signed informed consent; for patients under the age of 18, both parental (legal guardian) consent and patient assent are required.
- Initiating treatment with DUPIXENT® for a primary indication of asthma according to the country-specific prescribing information.

- Patients who have a contraindication to DUPIXENT® according to the country-specific prescribing information.
- Treatment with dupilumab within 6 months before the screening visit, or within 6 months of the baseline visit if the screening and baseline occur on the same day
- Any condition that, in the opinion of the investigator, may interfere with patient's ability to participate in the study or personal conditions and circumstances that can predictably prevent the patient from adequately completing the schedule of visits and assessments.

NOTE: Other protocol defined Inclusion/Exclusion criteria apply.

Eligibility last updated 6/23/22. Questions regarding updates should be directed to the study team contact.

Note: Other protocol defined Inclusion/Exclusion Criteria may apply.

Eligibility last updated 6/29/23. Questions regarding updates should be directed to the study team contact.

Inclusion Criteria

• Only subjects who are eligible for ongoing IRB-approved studies will be deemed eligible for this protocol

Exclusion Criteria

• Pregnant or breast-feeding women
• Subjects who are ineligible for ongoing IRB-approved studies will not be included in this protocol

Adults who are receiving the POSE2 as part of the main study on POSE2 safety and feasibility (IRB 19-001254).  Inclusion criteria are the same as those of the main study on POSE2 safety and feasibility (IRB 19-001254), with the addition that they must be able to safely undergo non-contrasted MRI testing.

• Provision of signed and dated informed consent form.
• Subject agrees to be compliant with study requirements and adhere to post-operative dietary & exercise recommendations for the duration of the study.
• Subjects between the ages of 22-60 years old.
• If female, be either post-menopausal, surgically sterile, or agree to practice birth control during year of study and have negative serum HCG at screening/baseline.
• Have a Body Mass Index (BMI) of ≥ 35 and < 40 with one or more obesity related co-morbid conditions (defined by 1991 NIH Guidelines (Appropriateness Criteria for Bariatric Surgery: Beyond the NIH Guidelines)).
• Pre-diabetes – Fasting plasma glucose test > 100 mg/dl but ≤ 125 or oral glucose tolerance test ≥ 140 mg/dl but < 200.
• Diabetes – Individuals taking insulin and/or oral hypoglycemic medications or have a fasting glucose > 126 mg/dl.
• Hypertension – SBP >140 or DBP > 90 or the use of an antihypertensive medication.
• Dyslipidemia – Triglycerides > 250 mg/dl or cholesterol > 220 mg/dl or HDL < 35 mg/dl or LDL > 200 or use of lipid lowering medications.
• Sleep Apnea – A formal sleep study test consistent with this diagnosis; Epworth sleepiness scale ≥ 6; Polysomnography with respiratory disturbance index ≥ 10 hyponeic and/or apneic episodes per hour of sleep.
• Venous Stasis Disease – Presence or history of pretibial venous stasis ulcers.
• Chronic Joint Disease – Deterioration of joint cartilage and the formation of new bone (bone spurs) at the margins of the joints.
• Absence of current severe systemic disease (including, but not limited to: coronary artery disease, chronic obstructive pulmonary disease, congestive heart failure, cancer, and chronic renal disease).
• Agrees not to undergo any additional weight loss interventional procedures or liposuction for 12 months following study enrollment.
• Have not taken any prescription or over the counter weight loss medications OR those that can suppress appetite/induce weight loss for at least 6 months and agrees not to utilize for 12 months following study enrollment (including all stimulant medication).
• Subjects must be willing to possibly forego any future weight loss procedures (i.e., Vertical Sleeve Gastrectomy) given the unknown long-term effects.
• Residing within a reasonable distance from the Investigator’s treating office (~50 miles) and willing and able to travel to the Investigator’s office to complete all routine follow-up visits.
• Must be able to safely undergo non-contrasted MRI testing.

Exclusion criteria are the same as those of the main study on POSE2 safety and feasibility (IRB 19-001254), with the additional exclusion of patients who cannot safely undergo non-contrasted MRI.

• History of (or intra-operative evidence of) prior bariatric, gastric or esophageal surgery.
• Esophageal stricture or other anatomy and/or condition that could preclude passage of endoluminal instruments or procedure execution.
• Moderate gastro-esophageal reflux disease (GERD), defined as symptoms that cause subject severe discomfort, compromise performance of daily activities, and/or condition is not entirely controlled with drug therapy.
• Large hiatal hernia (> 3 cm) by history or as determined by pre-enrollment endoscopy.
• Pancreatic insufficiency/disease.
• History of gastroparesis or symptoms that would be suggestive of gastroparesis or generalized dysmotility (e.g., esophago-gastric motility issues and lower esophageal sphincter abnormalities).
• Pregnancy or plans of pregnancy in the next 12 months.
• History of a known diagnosis or pre-existing symptom of rheumatoid arthritis, scleroderma, system lupus, or other autoimmune connective tissue disorder.
• Immunosuppressive medications or systemic steroids (i.e., oral prednisone) within 6 months of Visit 1. Intranasal/inhaled steroids are acceptable.
• Unable or unwilling to avoid use of aspirin and/or non-steroidal anti-inflammatory drugs (NSAIDs), or other medications known to be gastric irritants beginning two weeks prior to enrollment and throughout the entire study.
• History of inflammatory disease of the GI tract; coagulation disorders; hepatic insufficiency or cirrhosis.
• Active gastric erosion, lesion, or gastric/duodenal ulcer.
• History of or current platelet or coagulation dysfunction, such as hemophilia.
• History or present use of insulin or insulin derivatives for treatment of diabetes.
• Type II Diabetes Mellitus (as defined by HgbA1c >6.5%) for greater than 11 years at the time of enrollment.
• If smoker, plans to quit smoking in the year after enrollment.
• Portal hypertension and/or varices.
• Patient has a history of drug or alcohol abuse or positive at screening for drugs of abuse.
• Present or history of psychosis, bipolar disease, or obsessive-compulsive disorder after pre-enrollment history and medical /psychological assessment.
• Beck Depression Inventory (Short) Score ≥ 12 and/or uncontrolled depression after pre-enrollment psychological and medical assessment. 1
• Patient score >2 in any of the 9 identified symptoms on the Gastroparesis Cardinal Symptom Index (GCSI).
• Patient with a 13C-Spirulina Gastric Emptying Breath Test (GEBT) result that is less than a kPCD/min of 34.4 at 120 minutes or 43 at 180 minutes.
• Non-ambulatory or has significant impairment of mobility (i.e., cannot ambulate for 30 minutes).
• Known hormonal or genetic cause for obesity including untreated hypothyroidism (TSH >5.0 U/ml).
• Participating in another clinical study.
• Subjects with a personal history of allergic/anaphylactic reactions including hypersensitivity to the drugs or materials that will be utilized in the study procedure.
• Physician’s assessment that the subject is not an appropriate candidate.
• Subjects who are unable to safety undergo or who would not tolerate non-contrasted MRI.
• 1If significant findings for depression and/or suicidal ideation are identified, the psychologist(s) assigned to the study will be contacted and arrangement will be made for immediate intervention according to the Institution’s standard procedure.

• Strong clinical indication for MRI; in the clinical setting where MRI is the diagnostic modality of choice for a specific disease state without acceptable alternative imaging technology
• Male or Female
• 18 years of age or older
• Able to provide informed consent
• Presence of CIED

• Presence of metallic objects that represent a contraindication to MR imaging, including: MRI-unsafe intra-orbital or intra-ocular retained metal fragments, and MRI-unsafe intracranial vascular clips and coils, other MRI-unsafe devices
• Morbid obesity (abdominal diameter greater than 60 centimeters) which results in contact wiht the magnet bore.
• Pregnant at time of scanning Pacemaker or Implanted Cardiac Device that is labeled as MRI-Conditional (approved by the Food and Drug Administration for exposure to MRI)
• Pacemaker dependent and either: 1) device implanted before 2005, or 2) advisory pulse generator that may lower outputs in the setting of radiofrequency currents

• Patient with a current primary spine tumor or history of a primary spine tumor, including tumors within or surrounding the spinal column and/or spinal cord.  This includes exrtradural tumors, intramedullary tumors, (i.e., astrocytomas, ependymomas, etc.) and extramedullary tumors (i.e., meningiomas, neurofibromas, schwannomas. etc.).
• Ability to understand the content of the patient information/ICF.
• Willingness and ability to particpate in the registry according to the RP.
• Signed and dated IRB/EC approved written informed consent OR
• Written consent provided according to the IRB/EC defined and approved approvals for patients who are not able to provide independent, written informed consent.

• Patient diagnosed with a metastatic tumor of the spine.

Eligibility last updated 8/31/21. Questions regarding updates should be directed to the study team contact.

• Diagnosis of fibromuscular dysplasia (FMD), segmental arterial mediolysis, and/or spontaneous coronary artery dissection (SCAD)

• Missing records to determine whether or not they have FMD

• Patients who do not accept to participate in research studies.

Patients who have undergone genetic testing for a CYP24A1 mutation with at least 3 of the following:

• Urinary Stone Disease
• Nephrocalcinosis
• Metabolic Bone Disease
• Serum Calcium ≥ 9.6 mg/dL
• Parathyroid hormone (PTH) < 30 pg/mL
• 1,25-dihydroxyvitamin D > 40 pg/mL OR a family member of a patient who meets the above criteria

Patients who have tested negative for a CYP24A1 mutation with an alternative diagnosis that might explain hypercalcemia/hypercalciuria/stone disease:

• Sarcoidosis
• Lymphoma
• Tuberculosis
• Fungal infections
• Excessive exogenous calcium or vitamin D intake

• Patients 18 years or older with obesity (for adults BMI ≥ 30kg/m^2 or BMI ≥ 27kg/m^2 and at least one obesity-related chronic disease (such as type 2 diabetes mellitus, hypertension, obstructive sleep apnea, amongst others)).
• Individuals undergoing an evaluation for weight loss interventions (e.g., diet, medication, bariatric endoscopic procedure, or surgery)

• Principal investigator discretion.
• Individuals who are unable to sign consent (e.g., those declared legally incompetent).
• Patients without a tracking device (smart phone or wearable device).

Eligibility last updated 5/3/23. Questions regarding updates should be directed to the study team contact.

• ≥ 8 years old on date of surgery.
• Male or female.
• Diagnosis of idiopathic scoliosis for which surgery is recommended to prevent progression of the curvature or to correct trunk disfigurement and a non-fusion surgery is scheduled within 4 months.
• Thoracic or lumbar primary curves.
• Preop Cobb Angle ≥ 30° and ≤ 65°.
• Skeletally immature: Risser (< 5) and Sanders (< 8).
• Spina bifida Oculta is permitted.
• Spondylolisthesis and Spondylolysis are permitted, as long as non-operative.
• Osseous structure dimensionally adequate to accommodate screw fixation, as determined by radiographic imaging.
• Failed or intolerant to bracing.
• No prior spine surgery.

• Presence of any systemic infection, local infection, or skin compromise at the surgical site.
• Skeletally mature: > 7 Sanders.
• Prior spinal surgery.
• Documented poor bone quality, defined as a T-score -1.5 or less (If DEXA collected as routine care).
• Any other medical or surgical condition which would preclude the potential benefit of spinal surgery, such as coagulation disorders, allergies to the implant materials, and patient’s unwillingness or inability to cooperate with postoperative care instructions.
• MRI abnormalities (including > 4mm of Syrinx and/or Chiari malformation).
• Neuromuscular or other serious co-morbidities.
• Thoracogenic or cardiogenic scoliosis.
• Associated syndrome or developmental delay.
• Unwillingness, inability, or living situation (e.g., custody arrangements, homelessness, detention) that would preclude ability to return to the study site for follow-up visits as described in protocol and Informed Consent.
• Unwillingness to sign Informed Consent Form and participate in study procedure.
• Subjects who are pregnant at the time of enrollment.

• ≥ 8 years old on date of surgery.
• Male or female.
• Diagnosis of idiopathic scoliosis for which surgery is recommended to prevent progression of the curvature or to correct trunk disfigurement and a non-fusion surgery is scheduled within 4 months.
• Thoracic or lumbar primary curves.
• Preop Cobb Angle ≥ 30° and ≤ 65°.
• Skeletally immature: Risser (< 5) and Sanders (< 8).
• Spina bifida Oculta is permitted.
• Spondylolisthesis and Spondylolysis are permitted, as long as non-operative.
• Osseous structure dimensionally adequate to accommodate screw fixation, as determined by radiographic imaging.
• Failed or intolerant to bracing.
• No prior spine surgery.

• Presence of any systemic infection, local infection, or skin compromise at the surgical site.
• Skeletally mature: > 7 Sanders.
• Prior spinal surgery.
• Documented poor bone quality, defined as a T-score -1.5 or less (If DEXA collected as routine care).
• Any other medical or surgical condition which would preclude the potential benefit of spinal surgery, such as coagulation disorders, allergies to the implant materials, and patient’s unwillingness or inability to cooperate with postoperative care instructions.
• MRI abnormalities (including > 4mm of Syrinx and/or Chiari malformation).
• Neuromuscular or other serious co-morbidities.
• Thoracogenic or cardiogenic scoliosis.
• Associated syndrome or developmental delay.
• Unwillingness, inability, or living situation (e.g., custody arrangements, homelessness, detention) that would preclude ability to return to the study site for follow-up visits as described in protocol and Informed Consent.
• Unwillingness to sign Informed Consent Form and participate in study procedure.
• Subjects who are pregnant at the time of enrollment.

• Enrollment must occur within 6 months of initial disease presentation OR within 6 months of refractory disease, disease progression, disease recurrence, second or secondary malignancy, or post-mortem.
• Patients previously enrolled on ACCRN07 are eligible to enroll on Tracking Outcome, Registry and Future Contact components of APEC14B1 any time after they reach age of majority.
• Patients with a known or suspected neoplasm that occurs in the pediatric, adolescent or young adult populations are eligible for enrollment as follows:
  • All cancer cases with an ICD-O histologic behavior code of two “2” (carcinoma in situ) or three “3” (malignant);
  • All neoplastic lesions of the central nervous system regardless of behavior; i.e., benign, borderline or malignant;
• The following other benign/ borderline conditions:  
  • Mesoblastic nephroma;
  • Teratomas (mature and immature types);
  • Myeloproliferative diseases including transient myeloproliferative disease;
  • Langerhans cell histiocytosis;
  • Lymphoproliferative diseases;
  • Desmoid tumors;
  • Gonadal stromal cell tumors.
• Subjects must be ≤ 25 years of age at time of original diagnosis, except for patients who are being screened specifically for eligibility onto a COG (or COG participating NCTN) therapeutic study, for which there is a higher upper age limit.
• All patients or their parents or legally authorized representatives must sign a written informed consent and agree to participate in at least one component of the study. Parents will be asked to sign a separate consent for their own biospecimen submission.
• If patients or their parents or legally authorized representatives have not signed the Part A subject consent form at the time of a diagnostic bone marrow procedure, it is recommended that they initially provide consent for drawing extra bone marrow using the Consent for Collection of Additional Bone Marrow. Consent using the Part A subject consent form must be provided prior to any other procedures for eligibility screening or banking under APEC14B1.

• All adult and pediatric patients with a type of nervous system tumor included in a list of histopathologies will be eligible to enroll in the Neuro-Oncology Program Registry and Biobank.  This list may be modified in the future.  The current list includes:
  • Astrocytoma;
  • Dysembryoplastic Neuroepithelial Tumor;
  • Ependymoma;
  • Ganglioglioma;
  • Glioma;
  • Gliosarcoma;
  • Medulloblastoma;
  • Meningioma;
  • Mixed Oligodendroglioma-Astrocytoma;
  • Oligodendroglioma;
  • Pilocytic Astrocytoma;
  • Pleomorphic Xanthoastrocytoma;
  • Schwannoma;
  • Subependymal Giant Cell Astrocytoma;
  • Subependymoma;
  • Primitive neuro-ectodermal tumors;
  • Vitreoretinal Lymphoma (adult subjects only);
  • Primary CNS lymphoma;
  • Brain metastases including, but not limited to, melanoma, breast, lung and renal cancers;
  • Pineal region tumors;
  • Germ cell tumors;
  • Hemangiopericytoma;
  • Diffuse Intrinsic Pontine Glioma (DIPG);
  • Intracranial solitary fibrous tumors;
  • Neurofibroma.
• Pregnant women will be included in this registry.

• Patients with a histopathology other than that listed above.
• Patients whose pathologic diagnosis cannot be confirmed will not be eligible to enroll in the Neuro-Oncology Program Registry and Biobank.