Electronic Contact Record Form and Screen Shots

NCI/Office of Communications and Public Liaison

APPENDIX 10

ELECTRONIC CONTACT RECORD FORM(ECRF) with SCREEN SHOTS

TYPE OF USER

Cancer Patient	Patients along any point of the cancer continuum, recurrence or a new primary who were previously treated, started but not completed treatment. Includes cancer survivors and those with treated myeloproliferative and myelodysplastic disorders, and treated DCIS. Post-treatment maintenance, etc.
Spouse, relative, friend of diagnosed cancer patient	Includes relatives/friends of deceased cancer patients
General Public	Members of the public including: symptomatic people and their friends/relatives, inquiries about pets, precancerous or noncancerous conditions. (Includes all non-health professionals e.g. educators, clergy, librarian, lawyers, CPAs, insurance agents)
Organization *	Contacts from organizations, healthcare facilities, advocacy groups
Health professional *	MDs,RNs,PAs,PTs,NPs, social workers, nutritionists, and other allied health professionals, public health professionals, cancer registrar
Scientist/Researcher *	Includes researchers and scientists in training
Media *	Newspaper, television, radio, web – media
Cigarette smoker – help to Quit
Other tobacco user – help to Quit
Relative/friend of tobacco user
Students *	Except researchers and scientist in training
Government/Congressional *	Congressional Aides; Federal Employee, etc.
Other/Not able to ascertain

*Do not ask demographics

Cancer Continuum

N/A	Non-Cancer interactions, Cancer Continuum unknown, Patient is deceased, general questions not about a specific individual
General Public/Undiagnosed	symptoms questions, finding a health center
Screening	Questions about screening or finding a screening program
Diagnostic	People who have a symptom or have been referred for diagnostic testing, but have not yet received an official diagnosis
Staging	People who have been diagnosed but have not yet begun treatment because they are being staged
Treatment	Patients who are in treatment, this could be any stage of treatment
Post-Treatment	Any questions about life after treatment; follow-up care, recurrence rates, late effects, etc..
End-of-Life	Would include hospice/palliative or other end of life conversations

SUBJECT OF INTERACTION

Understanding Cancer/General Cancer (G)	Heading
G-COVID-19	Use when main topic of conversation is COVID-19. Also use Special Code COVID-19
G-General Cancer Questions	Topics related to cancer in general that are not specific to a type of treatment
G-Symptoms	Topics related to symptoms of cancer in general, specific types of cancer, metastasis, or symptoms for recurrence
G-Cancer Statistics/Epidemiological Stats	Statistical data (e.g. incidence rates) not related to specific cancer patient/prognosis
G-Prognosis	Questions about prognosis for cancer at any stage including survival statistics
G-Research Donations	Questions about making donations to research (tissue, body, blood, etc)
G-General Donations	Donations to NCI, other organizations, and inquiries about solicitations (e.g. take me off your mailing list)
G-Suicidal Client
G-Other Inquiries	Any other questions that are not defined in list
Causes and Prevention (CP)	Heading
CP-Risk Factors	Questions about any type of risk factor for any type of cancer (e.g. HPV, Environmental, hormone use and cancer, EMF, etc.)
CP-Genetics	Questions about heredity/genetics as a risk factor or for cancer treatment
CP-Prevention	Any questions about how to prevent cancer (e.g. Diet and Nutrition – including preventing recurrence, exercise, etc)
Tests	Questions about any tests that are done to screen, diagnose, stage, monitor, follow-up for cancer, including risks and benefits of tests
Treatment (TX)	Heading
TX-General Treatment	Questions about treatment in general that are not specific to a type of treatment including healthy eating during treatment
TX-Surgery
TX-Radiation Therapy
TX-Chemotherapy
TX-Immunotherapy	Includes CAR T-cell, TIL, Vaccines (such as Sipuleucel-T), checkpoint inhibitors, BCG
TX-Targeted Therapy	Includes Monoclonal Antibodies, Angiogenesis inhibitors, examples: Sutent, Gleevec, Avastin
TX-Hormone Therapy
TX-Stem Cell Transplant
TX-Complementary and Alternative Medicine CAM-Medical Marijuana CAM-Biological Based Products CAM-Manual Therapies CAM-Whole Systems CAM-Mind Body/Spirituality/Energy Med. CAM-High Dose Vitamin C	Any questions related to any type of CAM used as any type of treatment (Biological based products, Body, spirituality, energy medicine, Manual therapies, Whole systems, marijuana, nutrition as supplement) Herbs, supplement/vitamins, food, special diets Acupuncture, massage, chiropractic, reflexology Homeopathy, naturopathy, Ayurveda Hypnosis, Tai Chi, Reiki, therapeutic touch, yoga, meditation, visualization, relaxation, prayer
Side Effects	Includes any type of side effects from treatment. (Side effects from cancer itself-code symptoms)
Clinical Trials (CT)	Heading
CT-General Information Only	General information about clinical trials are discussed, CTs as a treatment option, cost, enrollment and eligibility information, etc.
CT-General Information & Search	Including searches that result in no matches. Does NOT include CCR trials. Also code CCR Clinical Trials for searches that include the Clinical Center. Code as 1st SOI when a search is needed
CT-CCR Clinical Trials	Educated about or searched for CCR trials (NIH Clinical Center)
CT-Results & Outcomes	Discussed results of trial (This does NOT refer to sharing clinical trial search result). Includes client wanting to know about results of a trial he/she participated in or heard about.
Coping	Use when listening to client talk about coping, providing emotional coping strategies, or giving significant emotional support (for depression, anxiety, distress or any other psychosocial issues)
Managing Cancer Care (MC)	Heading
MC-Finding Health Care Services	Use when helping client find any type of health care services (GP, Screening, Treatment, Genetics, etc) Includes finding support, transportation, lodging services
MC-Managing Costs and Medical Information	Use when providing information about costs and structure of health care system as well as financial assistance
MC-Palliative/Hospice Care
Publication Requests		Also code Cancer Type
Smoking Cessation (SM)	Heading
SM-Cigarettes
SM-Cigars, Cigarillos, or Little Cigars
SM-Pipes	(not water or hookah)
SM-Chewing Tobacco
SM-Other Tobacco
SM-Marijuana (recreational use)	*For medical marijuana, see CAM section
SM-Cessation Counseling/Information
SM-E-cigs
SM-NRT (nicotine replacement therapy)
NCI	Heading
NCI-About NCI	Questions about NCI
NCI-Key Initiatives	Cancer Moonshot, Genomic Data Commons, NCTN, RAS, Bioinformatics
NCI Budget	Funding priorities, Budget, Getting funding, asking about/applying for grants
NCI-Problems with a CT search	User specifically states difficulty finding a CT or using the CT search form.
NCI Permissions Requests	Includes logo requests, artwork, text and licensing permissions/requests
NCI – Other	Includes product endorsement from NCI, employment verification, contacting NCI and NIH staff members, help with fund- raising or other events such as health fairs, scientific materials for researchers including cell lines, mice, etc.
NCI Resources	Questions about content, PDQ and cancer.gov comments and questions.
	Includes Breast, Colorectal and Melanoma RATs
NCI-Risk Tools	Includes Breast, Colorectal and Melanoma RATs (QuitSTART replaced Quitpal)
NCI-QuitSTART and other apps	(QuitSTART replaced Quitpal)
SEER	Heading
SEER Cancer Statistics
	CSR Current and Archived, Stats tools: Fast Stats, State Cancer Profiles, SEER*Explorer, Cancer Query System, Cancer Stat Facts
	i.e. SEER*Stat databases; SEER*Stat; Dictionary of SEER*Stat Variables; SEER-Medicare linked Database
SEER Datasets and Software
SEER Manuals	Coding and Staging Manual - Current and Archived and SEER Heme and Lymph Neop. Database Man.
SEER Registries/Training etc.	i.e. List of Registries; Cancer Registrars Training; SEER Quality Improvement documents
SEER - other
FB –Advertising (products/services)
FB – Fundraising
FB – Other Languages
FB – CAM Cures

PRIMARY CANCER SITE/TYPE

AIDS-related cancers	AIDS-related lymphomas, Kaposi’s sarcoma, and others
ALL	Acute Lymphocytic Leukemia
AML	Acute Myeloid Leukemia
Anal
Biliary Tract	Gallbladder and bile ducts outside the liver. Does NOT include intrahepatic cholangiocarcinoma (code as Liver).
Bladder
Brain
Breast	Includes breast exam questions
Carcinoma of unknown primary	Physician has specified that the primary site cannot be determined and diagnosis is CUP. Includes metastatic squamous neck cancer with occult primary. NOTE: If there is no specific site discussed, code Not Applicable
Cervical	Includes cervical dysplasia
CLL	Chronic Lymphocytic Leukemia
CML	Chronic Myelogenous Leukemia
Colorectal
Endometrial/Uterine
Esophageal
Eye	Includes intraocular melanoma and retinoblastoma.
Gastrointestinal carcinoid tumor/GIST
Head and Neck	Includes lip and oral cavity, laryngeal, pharyngeal, paranasal sinus, nasal cavity, and salivary gland.
Hodgkin Lymphoma
Liver	Includes intrahepatic cholangiocarcinoma
Lung and Bronchus
Melanoma	Includes all non-ocular melanoma regardless of site.
Myeloma/Plasma cell neoplasm
Non-Hodgkin Lymphoma	Includes CNS lymphomas and mycosis fungoides
Ovarian	Includes ovarian epithelial, germ cell, stromal
Pancreas
Prostate
Renal (kidney) & renal pelvis
Skin cancer (nonmelanoma)	Includes Merkel cell
Small Intestine
Soft tissue	Includes sarcomas/leiomyosarcomas, and heart, and uterine sarcoma
Stomach/Gastric
Thyroid
Other – Central Nervous System	Includes neuroblastoma
Other – Digestive
Other – Endocrine system	Includes pituitary, islet cell, pheochromocytoma, adrenocortical, parathyroid, and peripheral neuroepithelioma
Other – Hematologic system	Includes myeloproliferative disorders and myelodysplastic syndromes
Other – Leukemia	Includes leukemias whose type is unknown or not specified, or any other than AML, ALL, CML, CLL
Other – Lymphoma	Includes lymphomas whose type is unknown or not specified. Otherwise, code as HL or NHL.
Other – Musculoskeletal and connective tissue	Includes bone and joints
Other – Reproductive, female	Includes labia, vulva, vagina, peritoneal carcinoma, and gestational trophoblastic tumors.
Other – Reproductive, male	Includes testicular, penile, and extragonadal germ cell tumors.
Other – Respiratory	Includes malignant Mesothelioma and thymoma
Other – Urinary organs	Includes Wilms tumor (also code Childhood cancers)
Other Cancers	Use for a specific site that does not fit in any of the categories; includes all non-intestinal carcinoid tumors and paraganglioma. NOTE: if Dr’s diagnosis is CUP, see Carcinoma of Unknown Primary code
Childhood Cancers	NOTE: When choosing this code, be sure to also choose an additional code for cancer type.
Not applicable/no site mentioned	Includes benign & non-cancer calls, general questions, site-unspecified calls, clients that are unsure about cancer site/type and questions related to pet/animal cancer. Use Solo.

SPECIAL CODES

COVID-19 NCCAPS (NCI COVID study)	Use whenever COVID-19 is part of the interaction, regardless of who initiates the conversation about COVID-19.  Also includes when info about COVID-19 addressed only in f/u email.
CTCA Call (callers ref’d to us by CTCA)
VA Smoking Chat TMIST All of Us Research Program Dr. Rosenberg Affordable Care Act (ACA)
In the News (anything people saw on TV e.g. Angelina Jolie, etc.)
Vice President’s Cancer Initiative First in Human
CT Feedback (PIQ only)
Cancer Research Initiative Mailbox
Genomics Podcast
VA Lung Screening
Pediatric Petitions/Funding
FDA Referral (quit smoking)
Exceptional Responders
MATCH Ped MATCH
Emperor of All Maladies
VM Callback FB Live Event Hurricane DART Every Try Counts Cell Phone Risk E2112
PIQ Custom Phone Response PIQ Referred by DOC PIO Referred by Center for Global Health PIQ Incarcerated Client

ACTIONS: [up to 5]

None
Sent information by mail	Mail, letters, faxes, pubs, other printed material, PDQ stmts, CT searches, materials to walk-ins, or holding material for pick-up. Use when sending via NCI Pubs Locator.
Emailed caller information
Social Media Post
Warm transferred to Organization/Federal agency
Scheduled proactive callback
Other	Any other actions taken as follow-up (e.g. contacting POS for user)

SMOKING CESSATION

Yes
No
Scheduled Intake

REFERRALS GIVEN

Dr/Nurse/Pharmacist/SW/HP	Includes referral to Social Worker, nurse, pharmacist or other HP
NCI-Designated Cancer Center
National or Community Org/Other Gov Program	Use when referrals are made to community services, organizations, state and local gov’t programs, and federal gov’t programs other than NCI. Includes smokefree.gov.
Other Healthcare Facility	Includes hospitals, clinics, and screening facilities. Use when sending CoC hospitals or other facilities. Do NOT use when referring to BCCEDP programs, genetic services, NCI-designated cancer centers, or NCCCP hospitals.
NCI Contact Center	Inquiries referred to 1-800-4-CANCER
Smoking Quitline	Inquiries referred to 1-877-44U-QUIT
Public Inquiries
POS	Publication Ordering Service
NCI DOC/Program	NCI Divisions Offices & Centers (DOCs) e.g. refs to DCEG, CTEP, DCCPS, TCGA, SEER, etc. Includes providing contact information for Dr. Sharpless or NCI researcher.
NCI CCR/Clinical Center
CDC-BCCEDP	Use when a referral is given to Breast/Cervical Cancer Early Detection Program EXCEPT when referring to Missouri.
Genetics Services
International Referral
CPEN Bulk Printing
Other
None

CLINICAL TRIALS

N/A	Clinical trials were not discussed
Client Initiated	The topic of clinical trials was presented by the client
IS Initiated	The topic of clinical trials was presented by the Information Specialist

HOW FOUND OUT

REFERRAL
Relative/Friend	Incl. co-worker
Health Professional
MEDIA
TV
Radio
Huerta Radio Series
Magazine
Newspaper
NCI
NCI Publications	Incl. PDQ hard copy or fax
POS
ORGANIZATIONS
Organization/community group	Incl. hospitals, health agencies, CTCA
ACS
CIS parent institution	FHCRC
CDC
NCI-Designated Cancer Center
Other 800 service
State Health department
DIRECTORIES/OTHER
Phone book/directory assistance
Other printed source	Incl. book, package insert, newsletter, prof journal, non-NCI pubs
Other	Source not listed elsewhere, incl. NCI, NIH
“I just know it”
Internet
LiveHelp
Cancer.gov
Direct mail
NCI Facebook
Other Facebook
NCI Twitter
Other Twitter
NCI YouTube
Other Youtube
App	Incl. apps for IPhone, iPad, iTouch, Android, Blackberry, etc. NOTE: if specific app is listed, choose that code instead
Refusal
Did not ask