New Stripes for Zebras
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1 New Stripes for Zebras Marcia Boyle President & Founder Immune Deficiency Foundation Kathleen Sullivan, MD, PhD Chief, Division of Allergy and Immunology Children s Hospital of Philadelphia
2 A Patient-Powered Research Network
3 Founded in 1980, the Immune Deficiency Foundation is the national patient organization in the United States dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education and research. Mission Statement
4 IDF wants you to THINK ZEBRA! When you hear hoof beats, think zebras, not horses. In medical school, many doctors learn the saying, when you hear hoof beats, think horses, not zebras and are taught to focus on the likeliest possibilities when making a diagnosis, not the unusual ones. However, sometimes physicians need to look for a zebra. Primary immunodeficiency patients are the zebras of the medical world.
5 About Primary Immunodeficiency Diseases (PI) There are approximately 250,000 people who are diagnosed with PI in the U.S., and thousands more go undetected. Primary immunodeficiency diseases are a group of more than 240 rare, chronic disorders in which part of the body s immune system is missing or functions improperly. While not contagious, these diseases are caused by hereditary or genetic defects, and although some disorders present at birth or in early childhood, the disorders can affect anyone, regardless of age or gender.
6 Survey Research More than 35 surveys of patients and medical professionals since 1995 Highlights include: National Patient Surveys (1996, 2002, 2007, 2012) National Treatment Surveys (1997, 2003, 2008, 2013) 2009 IDF Patient Survey (Web-based) Prevalence Survey (2005) National Internet Treatment Survey of PIDD in the U.S. (2010) Medicare Access to Care Surveys: Patients, Physicians, Hospital Pharmacist Directors (2006, 2007) Physician Surveys Pediatrician Survey (2007) Family Practitioner Survey (2009) Use of IVIG in Treatment of PI IDF and AAAAI (2009) Pulmonologist Survey (2011) Early vs. Delayed Diagnosis of SCID (2010) Primary Immunodeficiency & Women s Reproductive Health Survey (2012)
7 Average Time to Diagnosis from Symptom Onset: All Diagnoses Median = 6.0 Median = Median = (N= 1,397) (N= 1,137) (N= 1,413) Sources: 2002, 2007 & 2012 IDF National Patient Surveys
8 Source: IDF 2012 National Patient Survey Primary Healthcare Professional Allergy/Immunology 38% General/Family Practice 26% Hematology 6% Immunology 18% Infectious Disease 5% Internal Medicine 15% Nurse Practitioner 2% Pediatrics 13% Physician Assistant 2% Other 14% 0% 5% 10% 15% 20% 25% 30% 35% 40% Q21. What kind of healthcare professional does the patient see most often for his/her healthcare? N=1427
9 Other Current Diagnosed Conditions Allergies Asthma Arthritis Cancer/leukemia Chronic fatigue Colitis COPD/Bronchiectasis Dermatomyositis (DM) Digestive disease Fibromyalgia Henoch-Schonlein Purpura Hepatitis Inflammatory bowel disease Iritis Kidney disease Lymphopenia Malabsorption Neurological disease Neutropenia Systemic lupus erythematosus Scleroderma Thrombocytopenia Thyroid disease Type 1 Diabetes Uveitis Other chronic condition 2% 0% 1% 3% 1% 4% 3% 4% 2% 1% 3% 2% 1% 8% 13% 9% 12% 16% 16% 19% 25% 35% 36% 36% 45% 59% 0% 10% 20% 30% 40% 50% 60% 70% Q19b. Please tell us about any diagnosed conditions the patient CURRENTLY has. N=1427 Sources: 2012 IDF National Patient Survey
10 Treatments for PIDD Intravenous immune globulin (IVIG) 72% Subcutaneous immune globulin (SCIG) 49% Intra-muscular immune globulin (IM) Bone marrow transplant Thymus transplant Gamma Interferon Gene therapy 4% 2% 0.1% 2% 0.1% Prophylactic antibiotics 18% PEG-ADA Other None of the above 0.3% 4% 8% 0% 10% 20% 30% 40% 50% 60% 70% 80% Q26. Has the patient ever received any of the following treatments for PIDD? N=1427 Source: IDF 2012 National Patient Survey
11 IDF Treatment Survey -SF-12 QoL Component & General Health Score Comparisons Better Health U.S SF-12 Mean Score : Physical Component Summary (PCS) Mental Component Summary (MCS) General Health (GH) Worse Health All Respondents SCIG IVIG * Significant difference between population with PI and the U.S. general population Source: IDF 2013 National Treatment Survey
12 ehealth Evolution for PI IDF launched an online electronic personal health record (ephr) Developed for individuals and families living with primary immunodeficiency diseases Patients track their symptoms, record medications and log health information No cost for patients and family members Fall IDF transformed ephr with new features, including cutting edge tracking and reporting tools: Sync with Microsoft HealthVault Set health and fitness goals and track progress Quality of Life survey instruments Connection to PI CONNECT
13 Blended Data: Inflammation in XLA Two sources: USIDNET and Patient Reported IDF Survey Asked IDF to perform a survey of patients with XLA USIDNET data on XLA patients Use of both a patient survey and USIDNET Registry data was important in gaining a better understanding of the association of inflammatory disease in XLA. Hernandez-Trujillo et al. Autoimmunity and Inflammation in X-linked Agammaglobulinemia. JoCI Aug 2014, Volume 34, Issue 6, pp
14 USIDNET vs. XLA Survey Reported Inflammation & Autoimmunity Condition Aches, malaise or fatigue Pain, swelling, arthralgia USIDNET Registry (N=149) XLA Survey (N=128) p value 22 (14.8) 44 (34.4) P < (12.1) 28 (25.0) P =.035 Abdominal pain 10 (6.7) 22 (17.2) P =.008 Diarrhea 13 (8.7) 27 (21.1) P =.005 Chills 1 (.7) 17 (13.3) P <.001 Shortness of breath 1 (.7) 21 (16.4) P <.001 Constipation 3 (2.0) 14 (10.9) P =.002
15 A patient-researcher collaboration For primary immune deficiencies Sponsored by PCORI
16 So much data! Advent of Electronic Health Record (EHR) Systematic collection of comprehensive individual data Digital registries and databases Accumulate knowledge on disease ehealth era 16,000-plus healthcare apps in the Apple store. This should be transformative!
17 Imagine! Harnessing large data sets to learn what treatments work Engaging patients and researchers collaboratively Cost effective research on outcomes
18 Unique challenges of rare diseases Sample size Limited funding Data is skewed to single center experiences
19 Hurdles and challenges of research registries Expensive infrastructure (funding) Time commitment for data entry Regulatory burden Lack of cross registry compatibility Finding the right questions
20 The ideal Patient input is critical Prioritize research questions Broad representation is essential Unbiased data collection Varied modes of health care delivery Private practice Subspecialist Academic centers
21 PI CONNECT Collect data on patients with primary immune deficiencies Diverse clinical problems >250 diseases Facilitate dialog between patients and researchers Support research on primary immune deficiency Help patients live BETTER
22 PI CONNECT
23 for PI IDF launched an online electronic personal health record (ephr) No cost for patients and family members >1000 patients September 2014 IDF new ephr Sync with Microsoft HealthVault Set health and fitness goals and track progress Quality of Life survey instruments o PROMIS 29
24 Outreach to Patients and Families IDF social media Facebook IDF Friends IDF s custom-built social network e-newsletters, newsletters and blogs Patient Education Meetings New patient packets Directed IDF website Videos
25 IDF ephr and PI CONNECT Info Card
26 IDF ephr Users Original IDF ehealthrecord supported almost 1,000 users with 48 different PI types. Demographics 22% 35% 32% 10% Gender 63% 37% 17 years or younger years years 65 years or older Female Male
27 PI CONNECT
28 The United States Immunodeficiency Network (USIDNET) oversees a Registry of Patients with PI. Funded by NIAID Administered as a program of IDF Physician-validated clinical data on over 3,800 patients with PI Laboratory results Genetic and molecular information Diagnostic criteria Longitudinal Data Incumbent upon clinicians updating patient records over time
29 USIDNET Strengths High quality data Depth to laboratory data Weaknesses Labor intensive Academic center skew Limited longitudinal data High regulatory burden ephr Strengths Patient reported outcomes Longitudinal data Good kinetic capture Weaknesses Diagnoses not validated Limited laboratory data
30 PI CONNECT Anticipate 1250 patients will be involved with PI CONNECT Both USIDNET registry and IDF ephr use the same servers and platforms, making transfer of data possible and secure
31 PI CONNECT
32 Regulatory aspects USIDNET Patient Consent Process IRB-approved Traditional consent language on 11 page paper form Time burden on patient and clinician PI CONNECT Electronic Consent Process IRB-approved with waiver of documentation Simplified and plain-language e-consent online o Patients can read and truly understand what they re agreeing to do o One click o No staff time required
33
34 Research forum Research blog Researchers and patients blog about topics Research bulletin board Patients post comments Research updates Videos posted as a resource Research round table IDF meetings foster collaboration
35
36 Imagine! New Stripes! Large validated data sets Patients and researchers collaborating Cost effective
37 Hurdles and challenges Expensive infrastructure USIDNET (first registry) $160,000 ephr (second registry) $27,000 Time commitment for data entry Pay, cajole, reward Blue button technology Regulatory burden Paper consents Electronic consent Waiver of documentation Cross platform compatibility Individual mapping PCORI mandates certain fields be shared EPIC compatibility Finding the right questions Researchers ask their questions Collaborate
38 The right question Meeting held at NIH in 2013 Multiple questions generated by patients and researchers Patients focused on optimal treatments What dose of immunoglobulin is right for me?
39 IVIG dosing: 10X range No clear guidance on the most commonly used treatment for immune deficiencies
40 PI CONNECT Ask whether patients feel differently on different doses PROMIS 29 o NIH-validated QOL instrument Collect antibiotic use information This dose is best for THIS patient! Personalized medicine
41 Patient involvement is essential Provide data Focus research questions Engage researchers How to keep them engaged? Rewards for continued data input Patients compare their QOL to others Prompts to enter data Video resources Invitations to round tables and webinars Focused staff member
42 Physician engagement is essential Newsletters Surveys Data reports Authorship on papers Payments Recognition of participating physicians Webinars
43 Summary What is working? Technology infrastructure Data (amount and standards) Online consent Patient engagement (so far!) What is evolving? Blue button technology Physician engagement Best formats for the collaborative dialog Engagement across registries Long term patient engagement Disappointments? None! It s been a great experience!
44 Thank you!
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